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| Home | Search | Founders | Guestbook | Survivors | Dedications | Contact Us |
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The NNFF guestbook is the heart of our foundation -- so many people have found kinship and support in each other! Please spend some time reading through the entries made throughout the past three years (click icon on right). Talk about your experience! Keep in mind that if you have an urgent question, you should email Donna or Jackie as we do not review the guestbook on a daily basis! |
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| Work with Youth Wrestling league...parents are concerned and are looking for information on this terrible disease. |
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| all igbo man i dey here okay 0000000000000000000 |
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| Thank you all so much for sharing your incredible stories. My husband is in the hospital now, day 11, and 3 surgeries so far. This website has provided me with inspiration, hope, and an acute awareness for this awful disease. |
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| Good job guys. Lot's of useful pages. Very nice site! |
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| Good job guys. Lot's of useful pages. Very nice site! |
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| DISCOVERY HEALTH CHANNEL - "MYSTERY DIAGNOSIS" NEEDS VOLUNTEERS. 'Mystery Diagnosis', airing on the Discovery Health Channel, covers the epic story's of the struggles of finding answers to a rare disease or disorder. On this episode, we are dedicating a story on a survivor of yours, the co-founder of the National Necrotizing Fasciitis Foundation (NNFF), Jackie Roemelle. During her segment, we need to show examples of the effects of Necrotizing Fasciitis, displaying major trauma to the affected area. If you would like to volunteer and submit any photos to Mystery Diagnosis, please contact Jon Rafols at the email address given to the right: The protection of the identity of the individual will be first priority, and permission releases will be given. Those photo's that will be chosen will have a "credit of contribution" at the end of our show. Deadline to all submissions is Friday, December 29th, 2005. For more information on the show, please visit the discovery health website. This message has been approved by Jackie Roemmele. All your help is truly helpful. I look forward to hearing from all of you. HAPPY HOLIDAYS!!! |
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| Thanks for your great site! I bookmark it. |
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| Thanks for your site! Good work! |
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| found you through yahoo |
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| Below is my first entry in the guest book....it has been ten yrs since my daughter Pamela died of Group A and NF on December 23rd 1995. I visit the site and am a member of the e-mail support group. I have learned to live again, but differently. I can't "get over it" but the pain has softened with time. It is still true that you need to be pro-active when it comes to your healthcare. Glad you found this site! Nancy Pamela's Mother ------------------------------------------------------------------------------ Jun 15, 1997 - 22:34 My name is: Nancy Soto Comments about the web site: I have been searching the internet since last August trying to find information on Group A Strep. I just found this web site last nite the 14th of June!! Well, I'm so glad I found this Organization. I don't have a story with a happy ending--My daughter, Pamela Renee Berkemeier, died on December 23, 1995 from Group A. I wonder if anybody knows that another death accoured from Group A? I wonder if the CDC ever wrote it down. The story is so filled with all kinds of mistakes that were made by too many. I would like to, in some way, be a part of the education of the medical world, and most important, to help spread the word to the popula- tion that we can't rely on the medical profession to always KNOW what is wrong. We must not be afraid to ask questions and quit being so trusting. Are there any local chapters forming? Or is that on the agenda for the future? Could I be put on the E-Mail list? I am Happy for the survivors! Unfortunately Group A has created two catagories, Winners,-and those that lost the battle. Thanks for being there!! Nancy I'm from: Phoenix, AZ |
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| I have been an NF Survivor for five years now---today is the fifth anniversary of when I contracted NF. My thoughts and prayers are with all of those who have suffered from this disease. I know what you are going through. My Survivor Story is on this site. I am doing very well now and can truly say that my life is back to normal...There are very few things that I CAN'T do as a result of having NF. I will always have a disfigured right leg, and while that does still make me sad from time to time, I know that being alive and having my mobility are what is most important....I read the messages and stories here periodically, and I post on this date every year to let others who are going through this know that there is HOPE and HEALING---a light at the end of that dark tunnel...Please keep the faith! I'm happy to communicate with anyone who is going through this NF ordeal. God Bless! |
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| It is healthy, I shall come on your site more often, thank. |
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| Thanks for this site.I too am a survivor of NF/streph A.I got it 3 years ago and after recovering I went looking on the internet for some answers to a lot of questions that I had. I found so little info that I pretty much gave up.Since finding this site I have been able to understand so much more about this than what all the doctors could tell me in doctor speak and to know that I am not alone in having to deal with this.Thanks again |
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| It was just discovered that my husband has this condition. He has had debridment surgery yesterday and today. We still do not know if he is going to survive it. He is a 55 year old diabetic heart patient. He's still hanging on. |
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| great website - were lucky for this kind of info available on the web. Without it Id be lost. The stories should help console my bro and mum as we are mystified by this disease. Will hiy you up with my late dad's story at some point. |
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| Saw the t-shirt on the site and ordered it. I will wear it with pride and dignity! Happy Holidays to all, keep up the fight, for those that are in the throngs of it, there is light at the end of the tunnel! |
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| I HAD NF 4 YEARS AGO AND IT'S HARD TO TALK ABOUT.THANK'S FOR THIS WEBSITE. TERRY FORE |
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| The show "MYSTERY DIAGNOSIS" NEEDS VOLUNTEERS. 'Mystery', airing on the Discovery Health Channel, covers the epic story's of the struggles of finding answers to a rare disease or disorder. On this episode, we are dedicating a story on a survivor of yours, the co-founder of the National Necrotizing Fasciitis Foundation (NNFF), Jackie Roemelle. During her segment, we need to show examples of the effects of this disease, displaying major trauma to the affected area. If you would like to volunteer and submit any photos to Mystery Diagnosis, please contact Jon Rafols: rafols at trueentertainment.net (please rearrage email address above to proper format.) The protection of the identity of the individual will be first priority, and permission releases will be given. Those photo's that will be chosen will have a "credit of contribution" at the end of our show. Deadline to all submissions is Friday, December 29th, 2005. For more information on the show, please visit the discovery health website. All your help is truly helpful. I look forward to hearing from all of you. |
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| Hello. Your website looks good. Nice job :). I am impressed... |
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| Hi, I'm a survior of NF. It's been 6 months since I been back on this site. I cry my eyes out everytime I read about another story.Where is this horrifing infection coming from and why so many people.I hear so many stories about women having this after a baby, (like I got it) what ever happen to the old days of women having babies? Your supposed to be happy not fighting for your life after you brought life into this world. It's not a rare case anymore, this is some serious disease.God Bless Everyone who has experinced this or who we lost, there all in my prayers. |
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| Sitting at my computer 24hrs after farewelling my mother (died of NF 03/12/05), I am still in shock and full of disbelief at what happened in just a very short 21hrs. Mum had an operation on her femoral artery on Thurs 1/12/05 and that afternoon I spoke with her on the phone. Apparently everything had gone well, she was happy with the anaethetist as she hadn't been vomitting like she normally would, sounded a bit drowsy but didn't think anything of that, and was sipping on some ice. I said to her that I would probably see her on Saturday with my two girls. the following evening at about 6.15pm my older sister phoned, very upset and said she'd had a phone call from the hospital and we needed to go in. I rang the hospital before I left home and spoke to the nurse in Intensive Care Unit who said to me that Mum had taken a turn for the worse during the day, her blood pressure was low and high temperature, she probably has an infection and we are going to take her for an abdominal CT scan in the next 15minutes. I asked if she was conscious and he said she was ( I didn't think to ask to speak to her!) but they would put her to sleep before she had the scan.He also said to me that it was not a life or death situation, so that put me a little at ease. I left for the hospital, picked up my sister on the way and we arrived there at 8pm. Mum was in an induced coma but still had not been for the scan. Eventually she had the scan and the surgeon then spoke with us. He indicated that Mum was in trouble, her bowel was blocked and she had an infection but they could not determine details from the scan so they would operate and see what was going on. He said that he knew he would likely have to remove a large portion of her bowel and she would have to have a colostomy bag. I sensed at this stage things weren't well and knew Mum would be horrified at having the bag, but if she survived then she would learn to live with it. In the early hours of Saturday morning Mum was taken to theatre, approx 2.5hrs later the surgeon came back to us and said it had been as he suspected and that he had removed part of her bowel and he had debrided a large area of her abdomen that was covered by the infection. He kept referring to her condition and I asked what is her condition, he replied by telling me NF. Although I had heard of this disease in the media I really knew nothing about it. He advised that her best chance of survival would be to have hyper-barric treatment which is only done at one hospital in Victoria. Half an hour later they called an ambulance to transfer her. My sister and I drove to the other hospital, once Mum arrived we waited approx 1hr before we were allowed in to see her. Her condition had deteriorated quite drastically in the short time since we had last seen her. We went out for a break and at 6.30am I said to my sister that she should ring her husband and get him to bring our disabled brother in to the hospital. Mum was transferred to have hyper-barric treatment and while waiting for our brother to arrive we spoke with nursing staff and explained that we wanted our brother to see Mum, they said they could but probably in the hallway between treatment and theatre ( they had indicated they would do more surgery to debride the dead matter) Mum arrived back into ICU and our brother visited with Mum.Her two eldest grandchildren also visited her. Shortly after, the surgeon assessed her condition and then spoke with the three of us. He said she had a less than 10% chance of making it through surgery, her system was now nearly fully reliant on the life support. Great stress then ensued as my sister and I determined the best course of action. We came to the decision that it was best not to go ahead with surgery and to leave Mum peacefully in ICU with the three of us at her side. We spoke to medical staff and agreed to have the support turned off gradually, within a few short minutes after the first two medications were ceased Mums heart gave out and her battle was over, as quickly as it had begun it seemed. Our Mum was just 66YO and full of life. A loving and caring mother and grandmother. She is sadly missed by her family but also by a large number of friends that she had made in her life. I would like to thank the many medical staff at both the Epworth Eastern Hospital and The Alfred Hospital for all their efforts to save my Mums life. Now while waiting for the autopsy report ( may be up to 6weeks) we must get on with our lives without our beloved mother. Easier said than done. Thanks to Donna and Jackie for this website and for spreading awareness about this most devastating disease, I really appreciate the opportunity to share my experience of the last couple of weeks and its life long effect. |
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| THIS IS A CONFIRMED SITE.I LOVE IT. |
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| I my self a cought the flesh eating after I had my baby through a c-section. It was December 4 th when I started feeling ill I was chilled and fevered even before I was discharged from the hospital I told my doctor and she said it was only because it was my only section ever and thats why I felt the way I did. That was on Saturday, by Sunday I couldn't even get out of my bed and I kept on taking asprin and it wasn't helping me at all. Monday morning my husband took me to my doctors office and Itold her how I was feeling and there was a bad odor coming from the insetion. She did not even look at it she told me I had a infection and wrote a perscription for antibiotics and sent me home telling me that I would feel better in a few days.It was Wednesday I woke my husband up early told him I was feeling like I was dieing so he started to get dress and told me he was taking me up to the hospital. We went up to the Vitoria hospital and had to sit and wait mean while my stomach was bigger than what I was When I was pregnant we wait for three hours when a nurse came up to us and told us to go to a walk in clinic.I thought I sat here for this long now they want me to go some where else. I was so furious with the medical people it was crazy how I was treated, but she begged me to please go that I looked terrible. So we got up and started to walk out and I said to my husband for get it lets go home. The same nurse ran out and told us don't you go home you need to see a doctor. So we drove to every walk in clinic in Prince Albert and they were so busy the wait time was like two hours and I was weak my husband told me lets go down to east flats clinic ,and when we walked in it was empty. But the doctor helped me into the treatment room and he asked whats that odor we told him that it is coming from the inscetion. They put me on the table and he looked at it lock the clinic down and phoned an ambulance but they told him it would take 20 minutes before they could get to the clinic. So he phoned the police and told them that we needed a police escort to the hospital.We took off and the surgeon met us at the door as we arived and started to put IVs into me andthe nurse stayed be side us till I went under. This is where they started cutting tissue away. I guess I was quite lucky that the doctor knew what I had. |
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| My mother was diagnosed with NF on Saturday, November 26th. I don’t know how long she had it, but I do know she had a fluid filled growth on her leg, which she finally went to the doctor’s on Wednesday, November 23rd to get treatment for. They insisted she go to the hospital, but she put it off. At her doctor’s follow up on Saturday, my sister and the doctor begged her to go. She did – and she is glad she did. I finally got to speak to her Wednesday, December 7th for the first time. She has lost a week of her life. After reading the helpful information on your website I knew what to expect, why and what they were doing to treat her, and how I could help my mother. My mother was so blessed to have skillful doctors to recognize this immediately and get her into surgery that night she was diagnosed. She is blessed she is healing so quickly – they expect her home by Christmas! She is blessed she has close friends who supported my family during this ordeal, and finally, we are blessed to have this website available to us. I plan to order the book for my family. This is life changing. My mother will not be the same after this. Thank you. |
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| my best friends brother matt contracted NF on Dec. 5 2005 and is fighting bravely as i speak it came out of no where he just started feeling like he had the flu and went to the hospital they told him he was fine and sent him on his way. he ended up going back a couple days later feeling worse and collapsed in the hospital they finally diagnosed him with NF and it was severe so far it has spread thru a whole half of his body. the dr.s cant even do surgery cuz they'd have to cut him in half. its beenn almost a week 3 days more than they expected him to live so were just praying for a christmas miracle. pray for him if u can we need all the prayers we can get. his name is Matt. Thank you. |
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| My husband is recovering from NF after being admitted to the ER on Oct 31, 2005. He got NF through a severe rash on his hand. He does auto body for a living and the rash was caused by a allergy to chemicals at work. Does anyone have any experience with workman's compensation? Also are there other auto body workers who have gotten this? My husband is expected to make a full recovery. His surgeon is amazed by his progress. His two long incisions, after the 5 debridements are almost completely closed. Hope to hear from someone. Thanks |
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| My Wife, Lynn, died because of NF on 5th November, 2005. Her fight against it was so brave. I was very proud of her. It had done too much damage. Until this "thing" attacked Lynn, we had never heard of it. Now it will haunt me for the rest of my life. All should know about NF. |
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| Thanks for this site. My Mum is currently in hospital 30/11/05)having been rushed in last Friday night and having emergency surgery for NF in her abdomen. Like many others I have to thank God for the skill of the surgeons and other hospital staff who diagnosed the problem and dealt with it so quickly. Without that she probably would not have survived. My Dad only died 6 weeks ago too so all the trauma is magnified. Thanks for all the contributors to this site which help to fill in the gaps which the hospital staff don't talk about. |
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| I HAD MY BATTLE DURING THE CHISTMAS SEASON OF 2003 IT REALLY MESSED UP MY LIFE AND MY LEFT LEG. NEED GUIDENCE AND HEP |
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| I am a survivor of NF, I contacted it in August 2001 and spent 10 weeks in the hospital and 7 surgeries later I am alive and living life to the fullest now, my doctor at the time and to this day denies that I had this, but my new doctor has agreed that I did and said I am very lucky to be alive. |
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| In Feb. of 2001, at the age of 31 I survived NF after having a c-section with my 3rd child. It was a horrific ordeal. I am blessed to be alive. Dealing with the disfigurement is still a daily struggle. |
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| I got NF after a white tailed spider bite in 2005 and it came back again in 2003. Thankyou for this site as it has made me feel im not alone. I am currently using a combination of sticks and a wheelchair, but I am so pleased to be alive to see my children grow up! Thanks again MD. |
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| I got informations that will be useful for my research work.THANK YOU. |
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| I am a three year survivor of NF. My ordeal began as a small abrasion on my elbow, followed by flu like symptoms with a high fever. I am quite thankful and lucky that I was diagnosed timely and accurately after being admitted to the hospital. After my twenty day stay, I recovered fully with only scars remaining on my right arm from the nine surgeries I endured. My full recovery time after being released from the hospital was roughly 60 days, which consisted of physical therapy for my arm and time to get my overall strength back after being on my back for so long. Anyone that would like to communicate with me as a survivor, feel free to reach me at my e mail address. |
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| My name is LaDonna and I am a four year survivor of nf. I am very blessed to be here today, because my journey with this diease lasted over a year with additional surgeries, and learning to walk again. I just want to say to all those affected by this horrible diease be blessed and turn to God always, because everything is in his hands anyway. My prayers to you all, and thank youfor all of your prayers as well. |
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| I am a NF survivor. April 03 contracted the bacteria in my right foot. The doctors were able to save the foot, but I still have numbness over about 1/3 of the foot. Good site. |
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| My mother was just diagnosed with NF today and she just had her first surgery. Can you please help my in finding out more information on this disease. She has had the symptoms for six days. Please help me to understand this. Thank you Kendra Maxwell Phone number (909)800-6912 Home number (951)243-1324 Hospital room number is (909)427-6527 Please call me I feel like Iam all alone in this |
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| I am a NF survivor. My case of NF was not from the Strep A bacteria but from the clostridial bacteria. I contracted it following surgery to remove my spleen. My complete NF diagnosis was Clostridial Myonecrosis. I would like to talk to anyone who has ever got NF this way. I have never heard of anyone else with this form of the disease. |
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| Thanks for all the information. I had to do a report on this disease. |
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| my grandpa paul visyak died febuary 15 2005 beacuse of that flesh eating desies or what ever it was it just started from a little cut it heald on the outside but not on the inside. he left alot of family that loved he expecially his grandaughters my little cousin kaylnn and i were just the little of his life when i was little i was grandpas little girl now it was my cousins kaylnns turn then she had a new baby sister and the sad part is she never got to know her grandpa. He was a wonderful man and to me it seemd like it was the docters fault he died because the said nothing was wrong with him. the would check to see what it was they said it was the flu and he went to the doctures twice and the said the same thing! when he went into surgry early in the morning he didnt even know he was in surgry he was sleping when the opend his leg up it was all mush he went into cartiac arresst he died and they brought him back twice but the third time it didnt work. He held are family together if someone had homework probles or didnt know how to spell some thing he knew he was the smartest man i knew. Now hes gone and are family misses him so much his wife nancy visyak has been sick ever scince he died she has been going down hill she has lost atleast 60 pounds since he died. My granpa was a wonderful man and hit hurts to think that he is gone forever. I would do anything to have me grandpa back. he left 8 grandchildren, 4 kids, his wife and mother who is 94 years old! and much more imidate family that misses him so much!!! |
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| Anyone wishing to speak to a survivor of NF feel free to contact me via email. I would be happy to listen, explain my situation with NF or share ideas and information. I contracted NF Dec. 13, 2004 during an emergency c-section. My story is posted under survivors if any of you all would like to take the time to read. Thanks so much and GOD please bless us all. My heart goes out to all who have lost a child. My heart also goes out to all with NF and to the family and friends of NF victims. |
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| Like many other stories that I have read here, mine is similar. Feeling sick, mis-diagnosis, several surgeries, sleep induced coma and ventilatores...I am lucky to be alive. It has been over one year since my wounds physically healed but I can't seem to get my energy or stamina back. This really is a catastrophic event in one's life. Would like to hear from anyone who needs support. |
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| This is an excellent website. Thank you. I would like to use the information here in my lectures to nursing students. |
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| I looked up your site because, I was asked to by my teacher. But I really enjoyed this site. There is alot someone can learn about this bacteria, and how to prevent yourself from getting it. Thank You for making this site to inform people of what is out there. |
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| Last night my mom had emergency surgery. Come to find out she has NF. She had part of her stomach removed. She is currently on a ventilator. She responds by moving her head when asked questions, and seems to know who people are. The doctor said there is a good chance they will have to go back in. I need someone to tell me she is going to be fine and she will get off the ventilator. Before i wrote this I read the other entries and even cried. I am trying to find out as much as I can about this. If anyone would like to share please contact me. I need some encouraging news. |
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| Had NF in 11/04, several surgeries later - Just now getting back to life. (10/05) Looking for others in NH or where ever. Who have also survived and started over. Looking for suggestions and support of overcomming the weakness and other problems that follow. Thank You! God Bless you all. April ; - ) |
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| i had a mild case of nf in the summer of 98. it started with a scrape from a tree branch on my right arm. (i was on a roof cutting down a tree that had fallen on a customers house down in Houston) this infection itched, and so i scratched it, which spread within the day to wherever else i touched.....all over my face, arms, and hands!!! the doctors at the ER did nothing for it, but they did suggest that i take some pain meds, which i of course refused to take. it took about three weeks for it to go away...i think that swimming in our highly chlorinated pool may have helped kill it since nothing else worked. |
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| I want to talk to survivors ASAP via email. Ged bless all |
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| I am a two time survivor of nf, and it started for me as a peri-anal abcess. I have had a total of twelve surgeries and lost most of the tissue on my buttocks and private area. I often visit the website because this disease took alot from me in many ways. I am alive and after only having a 5% chance it makes me know that miracles do happen. My thoughts and prayers are with everyone going through this horrific experience. |
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| Greate site. Thank you :) |
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| I have a dear friend who has been effected by this bacteria so I have been reading the stories from this site. I am having a hard time understanding some of the ignorance in the medical field. |
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| my friend is in the hospital with nf now fighting for his life.... please pray for Wayne Clark at LSU Shreveport Hospital,,, thankyou tina |
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| It was about one year ago this month that I lost my best friend & mentor, Sondra "Sondi" DiGrazia to NF. I had heard of the disease previously, following ocassional references to it in the news... but nothing prepared me for someone so close to be striken with it. Sondi was the epitome of virtue, striving hard to be an example of morals & values in a society quickly losing touch with both. Her smile was warm & infectious, her home was always open to stranger & friend... she often entertained guests at hours when most people would have shooed them away. Her house was a haven of peace. I am not making any of this up... it sounds like I am canonizing her, but this honestly was Sondi's way of life. She & her husband Lou, a paramedic, invested themselves into the lives of others, helping people to fight their addictions, live moral & godly lives, & all while raising a growing family. Sondi's career (when she was not being a mommy) was clinical psychology, dealing primarly with people with drug addictions. She was a very rare balance, shunning the fields extremes & seeking to help the individual realize THEIR part in the choices that placed them where they were. At Sondi's Wake, nearly 400 people showed up. At her Funeral, at 10 am on a Tuesday morning... a time when most people are at work or in School, 250 showed up to see her surrendered to God. I begged Lou to allow me the priviledge of being a Pall bearer, he kindly agreed. I balled my eyes out through the entire procedure. We never knew where Sondi got the disease, it went from being cold like symptoms, to flu like symptoms, & finally 3 days after it's first symptoms, Lou took her to the hospital out of concern for her hydration. Within 24 hours of her admission, she was rushed to Intensive Care. 14 hours after that, she was dead. I cried for nearly 8 straight hours that morning, not knowing that a human could hold so much grief for someone who wasn't a wife or child. Sondi was the dearest friend I ever had. The NF manifested itself 2 hours before she was rushed to the ICU. A smallish bruise appeared on Sondi's right arm, which rapidly got larger. Sondi, never one to complain (honestly) only stated that it hurt, & left it at that. Even when she was fighting for her life, & Lou was there at her bedside in ICU, her words were to encourage her husband, not screams of pain, but rather a simple "Trust God". That was the way she lived her life, & in closing her life out, it was her final words. It's taken me a year to be able to come here & share this. I looked this site up the morning of Sondi's death, & read it for days afterwards. I passed the site on to Sondi's mother, Marilyn, who added Sondra's name here 3 months after her death. (Janurary of this year) I'm glad that she did so, Sondi & her mother had a very special relationship akin to being best of friends, & her death really hit Marilyn hard. Sondi left behind her 3 children, David (7), Elizabeth (5), & Daniel (2) and a husband of 9 years. (I am guessing on that one, Lou never did tell me how long they'd been married.) Who ever thinks that they might pass away at only 35??? It's inconceivable.... but NF is no respecter of persons. I'm thankful for this page, this site, for the opportunity to bare my grief, & hopefully allow healing to come. I needed to share all of this in the worst of ways. Sondi really was the best friend I ever had... & I still miss her a year later. She was special, in every way, & her love & devotion to Christ, to her family, & to her friends really set her apart. I pray some day that her children find this testimony to their mom, & know that she was the dearest friend anyone could ever have. |
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| We lost my mom & Heathers Gramma 7/27/03 after a 4 yr battle with NF she is missed by many Her story can be read under NF survivors BETTY THORNLEY Please read it and respond to me or my Dad his E-mail is bbtddr881@hotmail.com We would love to hear from you Thank you & GOD BLESS |
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| Hi im a survivor of N.F. 04/2004 also had hernia repair 06/2005 waiting to have reconstructive surgery two years from now never thought it would happen to me. Want to talk and share your story you have my email. My hearts goes out to you all who have survivored N.F. and those who have lost a loved one. This is a great site. |
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| MY BEST FREIND RECOVERD FROM NF LAST MONTH |
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| FULL OF INFO. |
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| I am 23 and contracted NF after an emergency c-section, I am still recovering 6 months. I would love to talk to other survivors and share experiences, I am glad not to be alone. Thanks for the useful information on this site it has come into great use. |
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| So far, I am a survivor. I acquired NF while working as a restoration manager in New Orleans following hurricane Katrina. I am still waiting to hear if my employer's Workers Comp. insurance is covering my injury. Eight surgeries in twelve days has really kicked my behind. |
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| I have learned about Necrotizing Fasciitis within the last three days. By brother-in-law Andy, is 47 years old, mentally retarded, and recently had a biopsy on a brain tumor. He was rushed to the hospital three days ago with wounds in his neck, and he has been fighting for life since then. Due to the location of his wounds and his previous physical conditions, we have decided to just make him comfortable. I can say, this is one of the most horrific things I have ever seen. I thought this disease occurred in New York City, or Los Angeles. Not in Xenia, Ohio to a mentally retarded man. My family has been left to pray only that he no longer feels the pain of this disease. I've realized not too many people understand this disease, but I am hoping to try and educate myself. |
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| Thanks for having this site. The way the doctors were talking to me I thought I was alone. Not that I wish the disease on anyone but it is nice to hear all the survivor stories. God Bless you all! |
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| I enjoy your site very much! THANK YOU |
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| Charmey Darlene Ely January 29, 1959-October 2, 2005 Loving mother and grandmother who will always be in our hearts |
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| I am amazed at all of these letters I am reading about people surviving NF. It really makes me happy. My mother contracted it from a paper cut on a Monday and then got very sick she thought she had a stomach virus and continued to work until Thursday which by then she could hardly take care of herself. She didn't go to the doctor because she thought that she could not afford it. By Saturday she had no other choice the pain was awful. My granny took her in to the hospital. At midnight they air lifted her to another hospital. Thay operated and did everything they could they said her kidney's were starting to fail and soon after her lungs would go. I remember walking in to tell her that I love her and thinking she would pull through not realizing just what was happening and hearing a nurse say I don't think there is anything thing we can do. After I told her I loved her one last time sure enough there was nothing they could do she died minutes later. The stories I have read of survivors makes me happy to hear that there is hope for some who contract this awful disease. I know it will be a long hard road for them and my prayers go out to all who have survived and those who have lost family from NF |
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| Love the website NF is a life changing thing to happen to anyone |
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| Hi, my name is Jill Trauthwein. I'm 18 years old now... I was diagnosed with NF when I was 9. I had a lot of tissue removed from my left buttox (that's where the disease was most rampant), I also have a huge scare running across my stomach where it WAS open from the disease, i also have two smaller scars: One on top of my right leg and one on my back. I had to have a colostomy for nearly four months while my bottom healed. It's a miracle I survived and to this day, I'm questioning as to WHY I lived? |
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| My husband survide NF infection in arm after month of hospitalization and surgeries we have now been home for 2 months. Although is arm is healing he is always lathargic, if not sleeping, unable to work more than 10/15 hours a week and isn't sleeping well at all (even with sleep aids) I'm wondering if anyone had the same recovery systems and can give me insight into what to expect? Thanks |
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| The “Flesh Eating Bacteria?” My personal experience with Necrotizing Fasciitis January of 2005, of this year I was to learn first hand about this mysterious disease. I spent over three weeks daily in the St. Francis hospital and watched and experienced what it is like to be stricken with this killer. My fiancé Edward Brittingham was brought to the E.R. on January 2, and he did not wake up for nearly eleven days. If it had not been for the fast moving efforts of the infectious disease doctor, and emergency debridement surgery performed on his left shoulder my fiancé would not be alive today. Because I was there from the beginning of his misdiagnoses until the day he was given a clean bill of health and said to be a miracle I feel I have something to share with others in the hopes that anyone I share this information with would be more cautious and more aware of how to prevent getting this disease and how to know when to see a doctor. What Is Necrotizing Fasciitis? Necrotizing Fasciitis, commonly called the flesh eating bacteria is caused by a strain of the group A streptococcus bacteria. This is the very same bacteria that causes “strept throat.” It is unknown to a majority of the population that this strain of bacteria under the right conditions can be deadly. The strept A infection can range from a mild skin infection or sore throat to something as severe as necrotizing fasciitis (soft tissue disease). It is the stronger m-protein serotypes of the bacteria that cause this life-threatening disease. They attack the soft tissue and the fascia (sheath of tissue that covers the muscle). Unlike sexually transmitted diseases such as herpes and aids this deadly virus has no respect of persons and can be contracted by anyone exposed to it. How do you get Necrotizing Fasciitis? According to Dr. Martin Blazer, President of the Infectious Disease Society and Chairman of Medicine at New York University, it used to be a disease that was only confined to hospitals. The Group A strept infection is easily contracted by only a minor trauma, yet a mixed bacterial infection can also occur after surgery, such as the case reported on the NNFF web site where a woman contracted this disease after a C-section. In order to get NF (necrotizing fasciitis), the bacterium needs a point of entry into your body. This can be by coming into contact with someone carrying the bacteria. They may have a sick child at home with a sore throat and not even realize they are a carrier. They may cough or sneeze and you can contract the bacteria through something as small as a tiny scratch or pimple. Nearly all cases where someone has gotten this disease they reported having some type of trauma, abrasion or open wound. However cases have been reported from no known trauma whatsoever accept a contusion. “There is still much to be learned as to how to prevent and treat this illness”, said Dr. Martin Blazer during his interview 4/12/05 on Good Morning America, he added that, “it is vital that we cut back on the unwarranted use of antibiotics because viruses continue to reinvent themselves and research on new antibiotics has nearly come to a halt.” Nearly all reports of this disease to date found on the NNFF web site have noted that the individual came into contact with this strain of bacteria directly rather than indirectly or through an inanimate object. How Ed was diagnosed. Ed first became sick during Thanksgiving complaining of sharp pains in his lower abdomen he was treated for symptoms that warranted a possible kidney stone and given ibuprophen. After a few days these symptoms subsided, following shortly after with pain in his left shoulder whereas he was given a sling and more ibuprophen and told to have complete bed rest. He was also taken for x-rays, urinalysis, and blood work. After two weeks of progressive symptoms Ed could not even stand anyone to touch him, nor could he walk without severe pain. There was a large enflamed area on his upper left shoulder, and the back of his left upper thigh was also enflamed and swollen nearly twice the size of his right, he was not able to hold down any food and his urine was dark red. What makes Ed’s case to date different from any other that I have read about so far is that in his case he was under the jurisdiction of the state of Delaware. He was being held at level 4 and confined to a work release housing unit here in the city of Wilmington. Many ethical issues came into play concerning Ed’s treatment and even though he was allowed leave the confines of the institution to look for work and to come home for furloughs the state had a paternalistic role in his health care and he was told that he would have to go through the on-site nursing facility if he felt ill and if they thought it was necessary he would then be transferred and treated in the hospital infirmary at the Howard Young Correctional Facility. Despite his complaints, progressive symptoms and overall deteriorating condition he was denied the right to go to a hospital, in fact he was told if he did so while out on furlough he would be considered an escaped felon from work release and returned to the main correctional facility for the remainder of his sentence. Although at the time we had no idea just how sick Ed was, it was later confirmed that there were other cases of NF reported by third parties being held in the infirmary. Ed’s condition was quickly deteriorated during the course of four days I went to battle repeatedly with this facility demanding action be taken. I was told by the facility’s on duty officers’ when I called them the day he was finally admitted that he was severely ill, and was in desperate need of a hospital requesting permission to take him there. The response was that I needed to bring him back to their facility and that they would decide. I was livid and proceeded to hypothetically ask them what if he was passed out here on the kitchen floor from cardiac arrest? Again I was told the same. Ed told me of the horrible things that had happened to others while in the care of the prison hospital infirmary that I will not even mention. Yet considering all the factors in play we had every reason to fear for his health as well as his life. The failure for the facility to recognize his symptoms and act in a timelier manner could have possibly cost Ed his life. We called everyone we knew who worked in healthcare, and even my pharmacists and no one had a clue what could be causing his illness. We also contacted a couple of lawyers who’d promised to make some phone calls Monday morning. I was nearly hysterical yet I knew it was important to stay level headed and calm if I was going to help him get the care he so desperately needed. To make matters worse the results of the blood work from the infirmary two weeks prior had confirmed that he had blood in his urine and Hepatitis C. They refused to treat him for his Hepatitis stating that he didn’t have enough time left on his sentence to be treated by their facility. We later found out that the healthcare facility was a profit making organization from Tucson, Arizona contracted out by the state of Delaware. January 2, 6:30 p.m. Ed returned back to the work release unit one and a half hours early and was walking so poorly that he stumbled spraining his right ankle getting to the car. Upon arrival to the work release facility he immediately went to the highest authorities and in desperation stripped down and showed them his condition. They finally decided he needed to go to the hospital. ST. Francis Hospital I arrived at the hospital on the first bus that would get me there, told them I was his wife and was taken into a room to see him; Ed was in excruciating pain and obviously under some form of sedation. He had been given Dilaudid for pain as I read on his charts and he told me, “they cut me Lee, they cut me.” I saw to it that he ate the food that was brought into him and that he was as comfortable as I could make him. That was the last time Ed was able to speak to me in his right mind for eleven days. At this point I was lead to believe that Ed was finally going to get the help he so desperately needed. I met with his physician and was told that following the drainage on his shoulder that he would be given antibiotics and pain medication and monitored for relief of his symptoms. Yet here is where his care takes an unusual turn. Another doctor enters the room and tells me that he has been contracted out by the state to give Ed his care; I then noted a direct change in his chart. This doctor had crossed out Ed’s pain medication completely and also noted that he should not be seen by a social worker. At this I began to realize how important it would be for me to be with him to be certain that he was getting the appropriate level of care, as he was not able to speak for himself. I went into action demanding that he be given pain medication at the nurses’ station stating that, “I don’t care what that doctor has written, Ed is entitled to proper pain management regardless of whether or not he is in the custody of the state!” The nurses agreed with me and the doctors orders were changed by the charge nurse. By 3 p.m. Ed was taken to the 4th floor and settled into a room. I went home and returned the next morning to find Ed alone, delusional and laying undressed and in need of bathing. I found it strange that the bandage on his shoulder had not been changed and inquired as to which nurse was assigned to him. This is how I learned give him a bed bath and change his linens while he was still in the bed. I sat with him all day, just holding his hand and trying to comfort him as he faded in and out of consciousness. I was watching him slip further and further away. Ed was receiving fluids, antibiotics, and Dilaudid intravenously yet during times of awareness he cried out in pain. I was so scared and afraid now more than ever that it was to late. What was happening to him? Would he never leave this hospital alive? I cried and I prayed, and decided to try to find out exactly what was wrong with him. With my student ID I was allowed access to the hospital library and began reading up on anything available for answers, it appeared to be cellulitis yet why hadn’t the doctors given a diagnoses? It had been 48 hours since he’d been admitted to the hospital and there were still no answers. At 6pm that evening a wound care nurse finally came in and changed his bandage. She informed me after looking at the large soupy infectious wound that they would be probably lance it further in the morning as it was so severely infected. She took a culture of the infection and then packed it with gauze and went on her way. I was told that the procedure would be at 8:30 tomorrow morning and I went home, and prayed. The Diagnoses When I arrived the next morning Ed was already down in the surgical area, I was swiftly escorted to his side only to realize that he was completely out of his mind and incapable of understanding what was happening to him. The team of health professionals explained to me that the infection in his body that was taking over his thought process as well, and that he had something called Necrotizing Fasciitis and he would probably go into a coma very soon and die shortly after if an invasive procedure was not performed on his shoulder. It was then explained to me that while inspecting the site of the infection that blackened (dead) tissue was discovered and the surgeon, Dr. Zabel, said to me that, “all the antibiotics in the world would not save him unless the dead tissue and surrounding tissue was removed.” Dr. Zabel also said that they would be placing an incision in his left inner thigh to drain it and that it did not appear to be NF but cellulites. This is when my worst fears were realized. Ed had been living in a virtual toxic condition now for weeks and indeed he would die very soon if emergency medical treatment was not performed. As no one else was there to sign the consent forms I did so, knowing that in fact I was breaking all the rules as I was not legally his wife. At that time it seemed the only thing to do and I decided I would deal with the ramifications later. The surgery I was told went well, and I felt a sigh of relief I did not know then that Ed was far from being out of the woods. The sight of the debridement was probably the most shocking thing I have ever seen in real life, it was straight from tales of the crypt. You can view very graphic images of other post surgery survivors by logging on to www.nnff.org. The entire dermis down to the muscle had been removed from the top of his shoulder. It was about 1 ½ inches deep across the back of the debridement site and thinned down to a fine layer at the clavicle. The acromion (shoulder joint) was also visible. After I saw the results of the surgery I wandered if signing the consent form as I did was the right choice. Yet now that I have learned so much about this disease I do not regret the choice I made as it was the only choice to save his shoulder and his life. Many patients who undergo these types of extreme surgeries are put into a drug induced coma as to prevent the patient from further trauma. This was not the case for Ed, and I did all that I could to prevent him from actually seeing the site of the debridement for the next two days. I did not understand it then but know now that I was engaging in the practice of nonmaleficence; by trying to prevent him from further harm. Ironic as it may be the very day following his surgery I discovered an article in the News Journal about this disease and searched out the author of the article. It was easy to find Kathy, a volunteer for the Necrotizing Fasciitis Foundation, and she became a vital support system for me during this time. Upon reading the article I also located the physician in the article that had recently saved another man’s life. Ed did not seem to be getting better and I needed to know if there was anything else that could be done at is time to ensure Ed’s recovery. The physician ended up filling in for our infectious disease doctor that Saturday and only made only one or two suggestions, stating that it was a wait and see situation. With that in mind and that fact that Delaware does not own a hyperbolic oxygen chamber he said that there was nothing more we could do but wait and see if the antibiotics started to take effect. Ed had many different professionals caring for him. His contracted primary physician, a urologist, at one point his creatin levels were 5xs higher than his base line, a hematologist, because his WBC was 10xs higher than normal, an infectious disease specialist, a surgeon, a respiratory therapist, a wound care nurse, a dietician and the nurses and assistants who were assigned to him daily for vitals, and medication. Through all of this I felt the overwhelming need to be there by his side to keep him comfortable and I believe my presence made a tremendous difference in his total recovery. Two days after the surgery, Ed’s bandages were removed and he got his first shocking glimpse of what had happened to him and needed to be heavily sedated. A special bandage was placed over the sight of the surgery, called a wound vacuum. A sponge and tubing are adhesively attached to the site of the wound and the tubing serves as sort of hose that it is attached to a machine that gentle vacuum’s away the fluids and aids in circulation. This wonderful new technology made it possible for Ed to receive a skin graph taken from a donor site on his right thigh in only one week . On the other hand his left leg remained terribly swollen and continued to drain large amount of fluid. I learned the correct way to change and wet pack the area and did so once daily while bathing him. Regardless of all efforts so far the leg remained extremely red and swollen. Three days after the woundvac was put into place his surgeon decided it was necessary to make another incision at his anterior lower left calf and did so with a surgical tome right there at bed side. I was very fortunate I thought to assist him. When he made the incision thick brownish red blood and pus flowed out of the wound like a waterfall and Dr. Zabel told me himself that he didn’t expect that much fluid there as I exchanged the padding three times during the procedure. Dr. Zabel explained to me that he did not have the NF in his leg that it was cellulites. This site was also left open to drain. The following morning I began to see real changes in Ed’s demeanor. It had been a nightmare eleven days and he was finally getting well. He was getting good reports from recent testing and everyone said he would be going home soon. He continued to remain bed bound and had not yet began any physical therapy. So I continued to help him in his personal hygiene and the nurses seemed to like the fact that I did. He still had one more surgical procedure to undergo and that would be a skin graph. I explained to Ed that they would most likely choose his right outer thigh as the donor sight; and they did. I also showed him reference book with graphics from the hospital library that showed details of this type of procedure. Ed didn’t want to see it and although he appeared to be on the road to recovery he had suffered a great deal of mental trauma. He had also become overly dependent on the Dilaudid and the nurses and physicians battled with him as they gradually brought his dosage levels down. I don’t know this for a fact but I believe he was receiving placebos twice daily. I fully understand why they would do this and this practice seems to be vital in cases such as Ed’s, which supports the principle of double effect, that being that the harm of him suffering withdraws from the medication far outweighed the good, ensuring that he would not leave the hospital with a physical dependency. Wednesday, January 26 around 11:30 a.m. two Duty Officers came to the room and without any warning whatsoever transferred Ed (he still could not walk) in a hospital bed back to the Infirmary of the prison. We panicked; even the guards themselves were in tears they knew fully well that Ed was in no condition to be put in the prison infirmary. I hired an attorney a week earlier in the event that the state of Delaware did something of this nature. Yet despite all my efforts contacting, and writing a Superior Court Judge, the Governor’s office, the Delaware Center for Justice, the Parole Board and the Warden, Ed remained there for nine days. The first four days he had no pain medication and no antibiotics. His leg began to swell again. He couldn’t hold down anything and during our only visit he cried and dry heaved the entire time. I began to believe that he would get a reoccurrence of the disease and die there. Yet my efforts and persistence paid off as the parole board granted Ed a medical release nine days later. Ed has been home now for three months and it has taken a great deal of time, love and the support of others whom he contacted at the NF’s web site to begin to let go of this traumatizing experience. He has since put back his lost weight and started working again this week. Ironically as it may be he was hired indirectly to install office windows and ceiling tiles in Dr. Zabel’s new offices in Newark. Ed told me how glad that Dr. Zabel was to see him looking so healthy and strong and adding that he was miracle. The support and prayers of our church, Out reach of Delaware, family and friends also played a big role in his recovery as a whole and I now realize the importance of using a holistic approach as well as a medical approach in aiding people to overcome this terrifying disease. God heard our prayers, I am so very happy to have “My Eddie Bear” home and we are now looking forward to our life together especially now that we both understand how important it is to our survival to take better care of our selves. Not to say that you should see a Doctor every time you get a cut or a scratch but to practice a healthy lifestyle and adhere a few simple preventative measures to stay healthy. How it can be prevented. According to the web site there have been two-hundred and nine people die from this fatal disease since 1994. Yet the web site also includes the stories and graphic images of over one-hundred survivors, one of which is “Edward Brittingham’s Story.” Although you can’t necessarily prevent yourself from getting this disease, you can lesson your chances with some basic hygienic practices (NFF Quick Fact Sheet p.2, par. 1). • Buy anti-bacterial soap and use it! • From the offensive standpoint, cover your mouth when you cough or sneeze. • Throw away tissues, wash hands frequently You could be the carrier and not know it. Fifteen to thirty per cent of the population carries Strep A at any given time usually with no symptoms. From a defensive standpoint: wash hands frequently, avoid contact with persons showing sore throat symptoms. Clean and care for even the smallest trauma, using an antibiotic ointment and sterile covering with frequent changes. For more information about “the flesh eating bacteria” necrotizing fasciitis log on to www.nnff.org. You will find Ed’s story there as well. I would like to thank, Dr. David Zabel, for his consent to use his full name in this assignment, and of course my sweetheart, Edward Brittingham for allowing me to tell his story and display his photographs from our personal experience. ______________________________________________________________________________ References WPVI TV April 5, 2005 Good morning America (8am edition) Staff MRSA Infections. National Necrotizing Fasciitis Foundation (1997-2003), http://www.nnff.org/nnff_factsheet.htm. retrieved 1/7/2005. |
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| Check out what's happening in our prison system here in Delaware as a result of this disease in our prisons by reading the new papers here or going to the delawareonline web page under forums. |
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| I am a survivor of NF. By the grave of GOD I'm here today.I fought a long battle, and is still fighting. My life will never be the same. Although I was diagnosed and treated in December 2003 to March 2004. I am still in constant pain. Sometimes I feel like giving up, but I don't. God didn't bring me this far to leave me.I feel truely blessed. Being sick has drawn me to closer to my Heavenly Father.I have made my peace with him.I am a living,walking, breathing miracle. If I ever had any doubt that God loves me, I truley kown now how much he DO love me.To everyone who survived NF, hang in there. Thereis a light at the end of the tunnel. As Martin Luther King said: " I,ve been to the mountain top, I've seen the promise land". It's beautiful. No weapons formed aganist me shall prosper. |
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| I also have survived n/f & also mrsa infection in the bone. I personally think that the mrsa is the reason I have survived the n/f. Still taking zyvoks antibiotics, and probly will for another 6 to 12 more months. I am still not able to bend my knee due to removal of cartliage, so I am almost destitute now for the last 9 months. My lady and kids are staying in a garage, I'm at a shelter, and social security is still having us without help. |
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| It was really onteresting to read, thanks. I contracted NF after a c-section a few years ago (22 years old). I had a large section of my stomach removed and was in intensive care for three months. It was a nightmare. I have since had another baby by c-section with NO problems thankfully. Just wanted to share that to give others hope. |
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| Excellent site - do keep up the good work. |
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| I WAS GLAD TO FIND THIS SITE.I WAS TRYING TO FIND A WAY TO DRIVE MY STANDARD VEHICLE, BECAUSE MY TISSUE FROM MY KNEES DOWN IS DEAD, FROM TAKING TO MUCH MEDICINE.MY LEGS DROOP AND HAVE BEEN DRIVING STANDARD HERE AROUND BASE. I AM GLAD I FOUND THIS SITE. I HOPE YOU ALL CAN BELIEVE JEHOVAH GOD IS OUR HEALER AND CAN HEAL YOU IF YOU CAN BELIEVE IN HIS TIME. |
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| My Dad had NF and he was healed by God's power and the power of prayer! |
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| My boyfriend was just diagnosed with NF and I'm in quite a panic. He has heard of NF but I don't think the doctors told him everything I found during my research. I don't know how to express to him how rapidly this progresses. It started as a sore on his hand, he went to the doctors and got treated. While treating he noticed a lump by his nipple. The doctor cut that out three days ago. "They called him today and had him pick up a stronger antibiotic and informed him of the NF present in his system. ???????? |
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| Greatsite |
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| In 2000 I developed NF on my right buttock& 2/3 of my right thigh. I spent months in Hospital and had over 40 operation's debridments and skin grafts. Multiple blood transfusions and both my lungs colapsed twice. I also spent alot of time in a hyperbaric chamber. Thankyou for this site as up until now I had no idea there were so many others with the same thing! I currently use a weelchair and crutches and I live every day with chronic pain. But I am alive and so very happy to still be here. I would love to chat with anyone with the same problems. Thanks again for this great site! |
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| In 2000 I developed NF on my right buttock& 2/3 of my right thigh. I spent months in Hospital and had over 40 operation's debridments and skin grafts. Multiple blood transfusions and both my lungs colapsed twice. I also spent alot of time in a hyperbaric chamber. Thankyou for this site as up until now I had no idea there were so many others with the same thing! |
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| A close friend is having a skin graft on a large hole on the left side of his butt. Is this operation routine and what is the recovery period? |
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| Although it has been almost 6 years (Nov. 1999) since my "story" began, I am reminded DAILY as I see and feel the scar left from cutting the bacteria from my abdomen. I thank God my life was spared so that I could watch my 4 children grow up. I do have a question, it seems as though I "get sick" eaiser now - seem to catch any "bug" that goes around and feel "drained" many times... I've often wondered if that is a "lingering symptom" from the bacteria. |
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| I too am a survivor. My doctor says I'm so lucky everytime I go to her office. But I wonder if someone missed something early on. |
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| Can anyone give me info on reconstructive surgery on a leg her year will be up in January and we where told maybe at that time the apearance of her leg could to be seen about but can not get any info on who does this or even if it does any good,my girl is twenty one and if there is any thing you can tell me please e-mail me and I am so glad for this site it has helped so many people. Helen |
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| My mother is Paula who commented in August of 05. I took my mother to the emergency room May 1st of 05. I tell you what.......It was the most horrifying moment in my life. My wonderful mother was helpless. She was so very sick. When they diagnosed my mother I had and empty pit in the bottom of my stomach. Praying to God every moment I got. I tried my best to stay strong for my mother's sake. The worst part of it all was when she was in there for the first couple of days. Then she woke up from her second sergery to remove that horrible disease. She was in ICU, she was in ISOLOATION. We had to were gloves and plastic drapes just to see her and hug her. I just lost it. I really believe in God and I thank HIM for keeping my wonderful mother alive to see my WONDERFUL little brother ADAM (he's Eight) grow up. I love my mother so very much. Thank you so much for this wonderful web site. God bless ALL who has been through this horrible mess. |
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| HI I am Lisa. I am a 33 year old mom with NF 1 and my 4 year old son also has NF. |
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| this site is one I most enjoy my computer for |
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| My father died on August 11, 2005 from NF. He wasn't feeling well on Monday evening, but the flu had been going around where he volunteered his time. He worsened on Tuesday to the point where he could no longer complete his sentences. My mother helped him to bed and noticed that his leg was swollen to twice its normal size. She touched his leg and it began to bleed. He was admitted to the hospital late Tuesday night, and my sister and I, who live in different states, flew and drove up to NC on Wednesday to be with him. He died 6 hours after I got there. He never woke up from the surgery that he had to remove tissue from his leg because they wanted to keep him sedated as he was on a ventilator. His blood pressure kept dropping, and all of his organs began shutting down. This happened so fast. I love my dad with all of my heart, and if you have a family member who has survived, please thank your lucky stars every day. This disease is tenacious; my dad was 6'4" and healthy. |
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| Thanks so very much for taking your time to create this very useful and informative site. I have learned a lot from your site. Thanks!! carisoprodol.testforfree.com |
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| My address change. Survivor 1998 |
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| Found out about NNFF through the Montel Williams show |
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| I watched the maury show and was touched by your web site . I just wanted to say all are courageous!!!! Michele out!! |
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| I missed the Montel show. Who was on it? I would loved to have seen the show! Any information on who was on the show would be greatly appreciated. May GOD bless us all keeping us happy, healthy and safe! |
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| Heard your story on Montel and decided to review your site. |
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| I WAS WATCHING YOU ON MONTEL TODAY. YOUR STORY IS REMARKABLE. THIS MAKES YOU STOP AND THINK. I AM GLAD YOU TOOK A STAND. E GOSSETT |
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| I watched the Montel Williams show today, and could not believe the things I heard and saw! I had two surgeries many years ago at a respected unniversity hospital. Although I did not know this at the time, I developed a horrible infection that left a large gapping hole in my abdomen. It was actually the flesh-eatting bacteria. What an informative show! |
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| I was watching montel show and one of the guests said to visit www.badsurgery.com |
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| I was watching Montel Show |
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| My best friend has just recently being diagnosed with NF. He awoke with a very swollen wrist and very painful. I took him to the doctor to be diagnosed with a sprained wrist. As the day got on, he become worse with vomiting and very dizzy. I thought that he had the flu coming on as well. By that night he ended up in Intenstive Care Unit of the Hospital. The doctors were not 100 percent sure on what it was. It was a very frighting 48 hours while they were trying to diagnose what the illness was. At times they were talking of amputation of his arm but he was very lucky to only lose his ring finger on his right hand. I did not realise how scary this virsus is and to see how fast it spreads is the worst thing. I am glad to say that my friend is slowly on the mend now. He is going to be starting Skin graphting soon and then do pysio to rebuild the muscle and tissue that he was lost during this time. Thank you so much for this web site. I was very glad to see that there was information out there to read about this condition. I feel that more education and awareness needs to be demonstrated with the NF virsus. It is a very nasty bug. I am just very thankful that my friend only lost a finger and did not pass away. |
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| Brians Story and update from my original entry earlier this month. Twenty Four years ago my brother Brian survived an almost fatal gun shot. He was told he would be bed riden, which he was not, he was told he would never walk again which he did and he was told he would never have children which he has three. Now Brian is at Harbor View Medical Center in Seattle Washington fighting Necrotizing Fasciitis (NF) since July 21st 2005. Brian is the third child of seven children in our family. From the time he was born Brian has been someone very special. As he grew he became a strong minded person and the rock behind the rest of us kids, until April 1981 when he felt he could not be the rock of the family any more and tried to take his life. Brian survived and so did the spirit he thought he had lost. Today Brian is fighting for his life, to be with his wife, three children and grandchild. Brian’s first child will be 24 in Oct, 2005 he never knew his daughter until this last year. Brian felt it was better for his daughter that he stay away and let her mother raise her. Well Amber (Brian’s daughter) is a beautiful loving person like her father with the same spirit for life as Brian thanks to her grandparents. This last year Brian, Amber and Bailey (Brian’s granddaughter) meet for the first time. It was the most amazing home coming for them including Janelle Brian’s wife, Jake and Jordan Brian’s two son’s, and of course the rest of Brian’s family. Because of this deadly bacterium they could have lost each other after waiting so long to find each other. They had always known each other existed but waited for the right time to meet each other and they did. Today Brian is still at Harbor View Medical Center but is doing better everyday. He has lost his entire left leg which was his paralyzed leg, including the femur. He is scheduled for surgery Monday 8/29/2005 to see how he is healing and if they can even start to close. I thank God and all the prayers from all of you at the foundation as well as all the prayer chains that were started in Brian name all across the US the night Brian was admitted into the hospital. But most of all I thank God for giving Brian a strong spirit and sense of life and also for giving him a wonderful wife that has stayed by him through all of this and will continue to do so for the rest of their lives together. God Bless you all. You are all in my thoughts. |
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| l live in the suburb of St. Marys North and my bout of NF occured in June 2000. Double whammy of infected left heel and scratching dandruff on top of head where ponytail was held, resulting in NF site inner left thigh. Mount Druitt hospital treated me for uncontrolled Diabetes, Blacktown Hospital (five days later)first operation my husband was told I was dead and go home and organise the funeral (three more operations there resulting in a hole from backside to waist about half a metre long, hands length wide in places and my little finger deep), helicopter flight (Careflight) to Royal Prince Alfred Hospital where they brought me out of the coma and stitched me up in places and performed plastic surgery in others. Hey I am alive, I might not move very much but the brain is active. By August 2000 I was in a wheelchair and working as a volunteer at the Paralympics in the Media Centre. I have continued on with my weekly radio programme amongst other things. Life is good, and I do get selfish and coddle myself if the slightest thing goes wrong. Been fighting a cough for about a year which comes and goes (mainly comes) and currently sniffling and snuffling a heap even though I had the blasted flu shot. Would like to put people's stories to air if they are happy with it, please let me know. |
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| I am a Certified Nursing Assistant thinking about going on into Nursing. I have seen 2 cases of NF in the years I have been working. I found your sight very interesting. I had no idea there were so many cases of NF |
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| My brother Bobby contacted nf sometime in Oct this year he had his leg remove and most of his upper thigh , it was heartbreaking to see this happing to someone so young as he had just turned 48 on May 28, two months after his 48th birthday he passed away, leaving behind his wife and 2 childern. Also his twin brother and a older brother and myself,also our parents who all miss and love him very much. We all watch him go through his own private hell we know he is with God in a better place now. But we all are still grieving over your lost. Thanks for letting me get this off my chest you have a great web site. |
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| I was looking for infomation about this terrible disease, and found it. The accounts and photographs are heartwrenching, and this site has informed me and will continue to inform many. You are doing an amazing job, and all who put this site together should be proud of themselves. |
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| I was searching for info on the bacteria in the gulf (warm waters) and open wounds. My husband recently underwent two surgeries and a 5 day hospital stay for a saltwater catfish puncture wound where the fin (bard) broke off in his finger. |
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| Bitten twice by brown recluse spiders. |
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| because i am a nurse...tq |
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| I contraced NF after an emergency cesarian in 2003. I have been told by my doctors that I should be able to have another baby but I wondered if anyone else had gone onto have a successful pregnancy and labour having previously had NF. I guess I'm just wondering how all the scar tissue wil stretch!! thanks very much... |
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| I survived a bout with NF 1 year ago (August of 2004). Initially, the doctor's thought I was a "goner" but with quality medical care at Waynesboro Hospital and Hershey Medical Center, and a lot of help and prayers from friends and family, I came thru it. I thank my wife (she's an RN) for her care and wisdom when I was "out of it"and then recuperating, my children for coming home from WI and CA to support us, the medical professionals who cared for me, and my God who performed a miracle. |
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| My mother was just diagnos with NF. We are not sure what this is and how fatal can it be. I need some advise on what to and to ask my mother's surgeon or doctor. She is still on the OR table as I write this email. My other sister is waiting to hear back from her doctor again with better news. Thankds for any advise you can provide us?? |
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| I contracted NF through an emergency c-section in Dec of 2004. I have to have another surgery to repair the hernia since they had to remove my abdominal muscles. I am so very very scared of more surgery. Have any of you all been in the same position? Maybe you can let me know about your feelings and how you have over come that fear of the next surgery after NF almost took your life. My heart goes out to all that have experienced NF and to all the loved ones of those with NF. May GOD bless us all keeping us happy, healthy and safe! .................Sincerely, Sharmion |
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| Well, it's been almost 10 months..I'm doing very well...the scars are still there tho, an everyday reminder of how lucky I am to be alive. I read all the stories on here, and they just touch my heart. If anyone needs a friend, someone to talk to that will understand what they are going through...please email me. Much love! |
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| HI ONLY WISHED THERE WAS AN UK SITE AS GOOD AS YOURS HAVING SUFFERED FROM FROM NF AND HAD THE SKIN ON MY RIGHT LEG 85% REMOVED BUT VERY LUCKY TO SURVIVE THANKS TO MY PARTNER KIM. I FEEL THAT KIM SUFFERED THE MOST WHILST I WAS IN A COMA AND I FEEL KNOWING SHE WAS THERE GOT ME THROUGH IT ALL. GOOD LUCK TO EVERYONE |
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| My fiance, Randy, an underwater photographer, age 49, developed NF after bumping his left thigh while riding his motorcycle on June 30, 2005. There was no visible injury, just excruciating pain, and eventually a fever, excessive thirst and mental confusion. After being in and out of the ER twice, he was finally rushed in for emergency surgery on July 12th and they found NF. A large portion of the back of his thigh was removed, including muscles, but he never awakened after the surgery, all of his systems were affected and he died August 3rd. Randy was a long-term Type-1 diabetic, whose kidneys had failed a year ago, and he was on dialysis while waiting for a kidney/pancreas transplant. It is a huge shock to us all that he is gone. I believe that ER/all doctors, nurses, and the public need more awareness and education about this deadly bacteria. |
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| I was struck down in May this year with NF,my left side and breast was effected.Like most people i almost died and spent 4 weeks in hospital,I am now well on course to making a full recovery,if any one wants to get in touch please do so. thanks Paul |
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| my brother and father both died of nf im in grief |
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| I went to the emergency room on Sun. May 1st , 2005 with this dreadful NF .I had to remain there untill June 29th . Eight full weeks . I had 13 or 14 debridement surgeries and of course a skin graft .I understand I almost died 3 times .Thank you for this website. |
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| aware of what the results are of a NF and interested in seeing what people have to share on this website |
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| It has been several months since I have visited this site. I am still shocked and horrified at the number of people affected by NF. Losing my brother Terry from NF has devastated my family. My thoughts, prayers and hope go out to everyone who has suffered, is suffering and has lost someone from this dreadful infection. August 23 will be my brother's sons 7th birthday. This is the 2nd one he will have to spend without his dad. He does remarkably well; although it is always hard to determine what is going through a childs mind. People tell you that the loss will get easier with time. That is B.S. it does not get easier, you just learn how to get through each day, one day at a time. When I think about the tremendous pain Terry endured and the pain of my parents, sister-in-law; his son and my sister and I, I literally become sick and it is like it is happening all over again. I wish I would have spent more time being grateful and enjoying each moment when he was here - I took it all for granted. Just five more minutes, just to hear his voice again. He was my best friend and he took a piece of my heart with him when he left. I know he is saving a spot for me underneath that climbing tree where we will once again laugh like never before... I love you BUBBA - Kiki |
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| This website gave us a lot of inspiration and enthusiasm.... You can see how this website has influenced the way we presented our hospital at http://www.sdarovia.cd H. Minardin |
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| I got NF with no explaination of how or why. This disease is not fun. Congrats to anyone who survives it. |
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| A very close friend of mine got NF in 1994 at the age of three. it proceded to eat away the skin in his arm, almost claiming his life, because it took the doctors so long to realize what was going on. One of the bones in his forearm was apparently eaten too. the doctors basically patched him together with skin grafts and didn't think he would make it, as he has massive scars all over his body.his arm can't grow, and he had to endure a painful surgery to lengthen it by a few inches. I hope Nobody else has to go through what him and his family went through. even last year, eleven years later, they went through hell in a handbasket with several more surgeries to at least make his arms almost as long as each other. |
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| My brother is currently undergoing treatment for NF |
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| Two years ago i contracted the nf ..... what has happen to my mind? |
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| I contracted this hellish monster in May of 2005. This was the first website I found that didn't confuse or frustrate me. Thank you for being there. |
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| I wrote in this Guestbook a few years ago, when I survived NF back in 2002, but I lost my right arm. A small price to pay to stay alive...at least I think so now! I miss my arm of course, but I would have missed more if I'd died! :) If anyone wanna have a new mailfriend, feel free to send me a note! I'm 34, and I'm a drummer. |
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| It has been said that Necrotizing Fasciitis is a rare desease but read the dedications page on this site and see how rare it was to the familys of those that have died from it, it is a killer, if you have any doubt what so ever that you might have it get to the nearest hospital as fast as you can and asked to be checked for NF, time is of the most importance with NF, this site will tell you the tell tell sign of this decease, it is your life the hospital is playing with so don`t be afraid to open your mouth and insist on being checked for this decease, read some of these storys on this site and see how some hospitals didn`t even know what to look for so don`t lay there and keep your mouth shut and die because some one at that hospital doesn`t like your attitude, just remember it is your life not theirs so speak up or you may be silenced forever. |
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| My best friend Ana Kinner is an NF survivor. You can read her story here. I was her next door neighbor for 2 years while in England, and I feel so guilty not to have been there for her when she needed me the most. |
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| I'm truely blessed. I never heard of NF until I was diagnosed in December 2003. I am a miracle.I went in the hospital 12/17/2003 until 3/5/2004.I had a total pf 12 surgeries. I had heart failure, Kidney failure, and respiratory failure. I was on life support. I'm still here. I know God has plans for me. I am a living testimony! My doctor anticipated amplitating my legs, but the bacteria had spread up into my abdomen. I am severly deformed from my nwaist to my knee. It took a long time to ajust to my deformities, and sometimes I still have problems, but the positive over powers the negatives. Again, I know I'm truely blessed. With love, Joyce |
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| This website is a terrific place for survivors of NF and for those of us who have lost someone dear to the horrid infection. If anyone is interested in blasting the television news shows with requests to see a *proper* segment done on prime-time television. I would think that 60 Minutes, 48 Hours, or even Oprah would be interested, but I don't think any of them realize that NF is not as rare as it is made out to be. My brother died on April 2, 2005, in Brooklyn, NY. Two weeks later a 10 year old in the Bronx (NY) passed away, also. Since my brother's death I have heard too many stories of people who have either died or survived NF. Still, there are so many people who know absolutely NOTHING about it. Anyone interested in shaming the television industry into reporting on this terrible infection, please contact me. Sara |
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| My family and I have recently lost a love one to this bacteria. Our love one need a bond-marrow, but was doing o.k. until he came home feeling ill. The doctors told us there was nothing they could have done, because he had no more white blood cells to fight the infection. He has only passed 3 weeks ago, leaving behind his wife of 18 years and a daughter thats 16 years old. Our family is still dealing with this lost and I'am everyone that has passed or survivored will be in our prayers... |
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| Two years ago I caught NF from laproscopic abdominal surgery. I can't go into details since a lawsuit is pending. I have many questions and would appreciate anyone who has or is considering suing to contact me. Thanks. |
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| WEBSITE IS GREAT! I'm a survivor of NF, it all started on Feb.28,2004 five days after I gave birth to my little girl. I was hospitalized for 3 months, and have 2 1/2 years of reconstructive surgery.Some days are very hard for me ,but looking at my daughter everyday makes me go on living life to the fullest.I still have alot of pain physically and mentally, and will someday over come this.My heart goes out to all. GOOD LUCK ,Brenda |
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| Thank you for this web site. I was hospitalised with NF in March this year (2005). I remained in hospital for five weeks while undergoing debridement and plastic surgery on my leg, plus treatment in a hyperbaric chamber. I then spent three weeks in a rehabilitation hospital. When I returned home, I needed to find out exactly what had happened to me. (I was in a medically induced coma for the first week) Your excellent web site has given me so much information about NF, and a true sense that I am not alone in battling this infection. I am grateful to be a survivor, and to have retained my leg. Wishing you all good health, and much happiness. John Walkom. |
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| My father is still in the hospital( cedars sainai) undergoing surgeries- this is only the second day- and his vital signs are consistantly getting better- from what was yesterday a very near death. We are still waiting to see whether they will be able to save his leg- the specialists and doctors at this hospital have been amazingly aggressive with their treatments- and I have all the confidence that they are doing the very best that they can. The speed at which this bacteria moves through the body is the most frightening thing- had we only waited a few more hours, the doctor said he would have been gone- it is unbelievable to see how much less uncommon this bacteria is becoming- so far he has no recollection as to what he might of contracted this from. |
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| HELP!!!!!!! |
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| This is an update about my brother Joe, he is still in the hospital ,since May 2,2005 , it is now June 16, 2005. His wound is still not closed and his protein level is very low. The plastic surgeons are waiting on his nutrition level to stabalize before they do anymore surgeries. The Dr. that left his infection go untreated at the prison he was in,has been fired by the state. This has been such a tragedy in our family. Our brother is so loved by his family and to see him go through this breaks our hearts. He has a long way to go , but he is alive for now. Our prayers go out to all of you that deal with this horrible illness. |
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| i had to do a presentation paper for school because i am in school for my medical assistant and i thought of doing this disease because not a whole lot of people know about it so i wanted to bring up the awareness of it and i have found out alot and i am going to tie it in with diabetes so if any of you have it please email me within the next few days so i can get my report done so that way people will know what can happen thank you all so much for putting your stories on the net thank you rebecca smith |
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| Great web site . I am a recent NF survivor andappreciate the information. |
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| I PICKED UP NF FROM A SMALL CUT FROM A PLASTIC CHUCK USED IN A REHAB CENTER USED TO PROP MY LEG UP THAT I INJURED IN A FALL.WITHIN 14 DAYS NF HAD TAKEN OVER MY RIGHT LEG AND AFTER 10 OPERATIONS IN 2 WEEKS AND ALMOST LOSING MY LEG AND MY LIFE I SPENT THE NEXT 4 MONTHS IN THE HOSPITAL .I AM NOW STILL IN REHAB TO GAIN FULL USE OF MY RIGHT LEG. BUT GOD HAD A BIG HAND IN MY RECOVERY FROM START TO FINISH. I WROTE A POEM ABOUT ALL THIS AND I WONDER IF IT WOULD BE ALL RIGHT TO SHARE IT WITH YOU? |
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| please mail me the details about this |
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| i want to know more about this bacteria |
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| We just lost our 17 year old first born son to NF. He came home from a friends, the next day he had a slight fever, and was vomiting. The next day the fever was gone and the vomiting had slowed, we gave him plenty of liquids and rest. We thought he had the flue. The third day he had half a popsicle and a craker, that night I went to check on him at 2:20 am and he was dead, with the movie Triple X (Vin Deisel) on the TV. I freaked out, life will never be the same. The Coroner said he had no outside evidence on his body. There was nothing we could have done. Somehow it was all internal. Our hearts are broken and we try to get through each day because we have 3 younger children. My prayers are with all of those suffering with or because of NF. |
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| i have a new friend that had NF and i'm so glad for those who survive. |
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| i'm a surviour of nf as i went into hospital for my appendixs by keyhole surggary and ended up haveing nf and most of my stomach and a scar from my left thigh to my right and i find your site ammazing thanks again sarah |
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| Please refer to my entry listed in August of "2004" regarding my daughter Bobbi Cartagena. As of today, June 2nd, 2005, Bobbi will be undergoing another surgery on June 9th, 2005 to repair and debride the hole that is still left in her stomach from NF. Please say some prayers for her as she is very frightened to have to undergo surgery again. Thank you for your love and support, and our prayers go out to all those who are suffering from NF. |
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| I had no idea this was so common. I had a tummy tuck almost a year ago, and had my left side of the scar eating by something. |
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| Interesting web site |
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| i had this in 2/2005 |
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| #1 site for me...had NF April 95..9 op's and 10 yrs later ..very informative to read about the problems others have to live with (not sure how to word it right.lol..)I get much comfort from this site..(used to get A's in English)..thanx everyone for sharing..Deb |
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| My story is posted with the NF survivors stories. I have pictures that have not yet been added to my story. If anyone would like to see pictures of my Beautiful Baby Boy Brendan that I only got to hold and LOVE for 5 days or of my abdomen you may contact me at sharm88@hotmail.com. I would like to take the oppotunity to wish everyone well and pray that no one ever has to go through what I have. I also pray that they put a stop to this horrid flesh eating bacteria that has physically and/or mentally debilitated so many lives. May GOD bless all keeping them healthy and safe! |
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| I found your website while trying to find out what "necritizing fasciitis" is..the doctors told me I had it plus a couple other infections. I was so sick I really never put two and two together during my hospital stay. I contracted it during an emergency c-section. One week later they took me into surgery and I came out with a huge hole in my abdomen; and the Doctors telling my husband if it were not for my age and strong will to live.....I would not have made it. I had to have surgery the next day again for debridement. Thank GOD that got it all. This all took place Dec. 13th where my beautiful baby boy Brendan was born. I got to have him for 5 days. He died on Dec 18th. I have been through so much but thank GOD I am here and alive for my other children. I pray that this never happens to anyone else. They mis-diagnose "NF" I think people need to be more aware . I am going to try to make people in my area aware, maybe I can help someone somewhere someday. I have to have another surgery to fix the hernia the other surgeries have left me with. I am very very scared!!! I would take all the physical pain over and over again though...if I could just have my beautiful baby boy back!!!.....This is in loving memory of Brendan Mathew my beautiful baby boy! |
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| My grandfather has recently been diagnosed with NF just yesterday. They removed muscle and tissue from his leg and will continue to do so until they get rid of the bacteria or amputate. He is 74 years old, and of course I am so frightened and feel extreme sorrow and sympathy for him and his terrifying pain. I never in my wildest imaginations would ever think that someone in my family would contract this horrible disease. My prayers are with the people out there who suffer with the disease and of course my own grandfather. Let us all pray for the awareness of this disease so the misdiagnosis', etc. will be less. And let us all pray for a CURE. |
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| I too am overwhelmed by the stories heartbreaking and sad our 8 year old son had NF and lost a lot of his shin skin he is healing well and I hope that he will never have to endure anything like that again. Our hearts go out to all of you Harry and Tracy Sharphead |
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| In April of 2005 my best friend/ex boyfriend died from NFF he had been in the hospital for a month and was sopossed to make it and then he suddenly got worse and died within a few hours...i never thought that i would be comming back to this site to put a dedication to him..he was 14 yrs old his birthday is in a few days he would have been 15. i really like this site because of the chance to put a dedication or survivor story on the site...when he was sick it gave me hope. thanks so much ~Catherine |
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| This story is about my brother Joe, he is an inmate at a local prison here in Ohio. He went unconcious on May 2,2005 while on his bed in the prison. They rushed him to the University Hospital in Columbus where he remains today, May 17, 2005 . He had his right shoulder and arm removed and most of his right side and some of his chest. The doctor told us they did not expect him to live , he is still with us and we are asking for your prayers. He had a long way to go and he is still in the icu. He is no longer on the vent and he is doing so much better than they expected. I believe in the power of prayer and he is an exceptional human being that made some mistakes in his life. Thank You and Good Luck to all of you.......... caroline |
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| I survived the desease in April 2004 and just wanted to share again what really has helped me through my healing both physically and mentally. My family kept a journal of what went on that included dates, what visitors had to say and even what I was saying during my drug induced stupor. After being released from the hospital, I continued to record my thoughts in the journal. It has been very theraputic especially when I look back now to just one year ago and to see the change for the better in my mental and physical state. For anyone going through it, I would recommend you give it a try! Good luck and continued recovery to all fellow survivors! |
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| I am a survivor. Came down with toxic shock and flesh eating bacteria November 8, 2004. Was not given the correct treatment and laid in ICU for five days before being moved to Oklahoma City. Thanks to many prayers and a wonderful doctor I did not lose my right arm as first thought. I have had plastic surgery on my hand but it will never be normal and I only have about 85% use of it. Was released December 6,2004. This bacteria is terrible and very hard on the families that have to watch the suffering of their loved one. Doctors and the public need to become more aware of this bacteria. It is deadly. |
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| I LIKE THIS SITE |
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| hey, nice site you got... will be back again |
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| best site of the year |
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| hi, i am currently 23 years old and had this disease at the age of 7 years old. the only difference is that it did not eat my flesh, but the muscles on my left leg, slowly moving up my body. i was lucky that the doctors did not leave me to it and had to be in daily contact to Sydney and Hong Kong for advice and medication. after countles surgurys (i have 6 large scars on my leg which were left open so they could scrap my muscles) - the most was seven in one day, and months of rehibilation i walked by myself. through this i now get athritis in my left knee and ancle plus will soon need to have a 'fake' cartalage put in. the pain of this does not bother me at all as i find myself (like many others) very very lucky. if anyone wishes to email me please do not hestitate. |
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| I am now recovering from NF!! |
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| i was serfing google and foung your site... nice place you got here, keep on working on it 8) |
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| Has any one who had nf had reconstructive surgery done to a part of their body ,can this be done. My thoughts and prayers are with every one who has had to go through this terrible illness. |
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| i came across this site by accident. Great site. |
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| Hey! Did anyone see the piece on TLC this past week (Monday)? It was titled "Untold stories of the ER." A man presented at the hospital with a spider bite; a brown recluse. I was very glad to see some media attention on the subject, however small it may be. If anyone would like to discuss their case with me, please drop an email- it would be very helpful to me as I am studying infectious disease/immunology. Thanks, and may God be with you all. |
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| I have had 3 reconstructive operations with four skin grafts (from my right eye lid) on my left eye and the surrounding area since September 2003 when NF attacked my face. I need one more surgery that will be scheduled in about two months. My reconstructive surgeon is a remarkably talented man. I would recommend Dr. Danny Sun - Sun Plastic Surgery in Everett, Washington to anyone who needs the services of a plastic surgeon. ActiPatch Therapy was used following my last operation and will be with my next as well. The ActiPatch was placed under my eye to help with healing and pain, I wore it continually for three days. I needed very little pain medication and healed more quickly than after the first two proceedures. I would be happy to share more specific information, if I can help don't hesitate to contact me. Make it a great day ... everyday! Pam |
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| The message below please put a s on the dustandshines for e-mail thanks dustandshines@yahoo.com |
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| This is a great site to talk to someone with the same illness God Bless all,does any one know of some one who had reconstructive surgery after there healing process. |
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| You got a great web site, keep on working Robert |
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| excellent very worthwhile as an information resource I'll be stopping on a regular basis |
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| This web site brings back some painful memories; I am also a survivor of NF. Two years ago, in April 2003, I nearly died of a disease no-one knew how to diagnose. I was truely fortunate to find some really great doctors at the University of Wisconsin Medical School, Madison, WI and they saved my life AND the leg some less enlightened doctors had planned to cut off. I am a walking miracle - the medical staff at the UW tell me I'm the only person to their knowledge who has both survived the disease AND walked away with no surgery - not even a skin graft! While I still have some resisidual pain in my leg, and have considerably less stamina than before the infection, I am 100% back to my job, which keeps me very busy and "on the road" much of the time. The doctors themselves don't understand it, but I know it was God's miracle. I would be happy to add my story to those on your site if you like. |
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| Well, just when I thought my life was going to be back on track,{my last entry was in jan or something} this disease has agian stuck its nasty self into my body. I got put back into the hospital agian after having an abcess or what started as one in my groin area agian, and it became infected. I went through yet another surgery, and I am left more disfigured in my private areas then ever. What a toll this has taken on my life. I am so thankful to be alive, after what I have been through, but my gosh this is soo crazy. I hope that my team of specialists {infectious disease} can help me. Please anyone out there pray for me this is not yet over. I am waiting to see if they will remove the rest of my colon whare this first happened, and intestine, they talked about a bag of some sort. please everyone all we can do is try to stay strong. |
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| I have had five surgeries to put in a pacemaker. I am on my third one now and feel good. The other two got infected and had to come out. I lost fifteen pounds because I could not eat the food they gave me in the hospital. JC |
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| This site is great! there is alot of cool info... |
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| Has anyone heard anything on the little 13 year old little girl that died in Cleveland OH an an other man in Elyria OH they died of Flesh Eating Bacteria. My Joe died March 23,2005 from this Flesh eating Bacteria.. Why do they keep it quite. The 13 teen year old was on our news an then was pulled an not a trace now.Now I am looking to find where they are from. Maybe I can find a common sorce. Some where they may have all been.The man town is only 15 mins from my home. an the little girl mabe 45 away.I just dont want anyone else to loose anyone to this. God Bless you all. All my Prayers to you with thisan to all who thave lost love ones.................................... |
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| Wow i think this site is great but i'm just about to under go a hysterectomy and i am scared i should say very scared.. thx for having me on your site Trish |
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| Saw Montels show. |
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| Yes, I am an NF survivor. Your Book and Web Site has helped me cope. I am currently going through reconstructive surgery. I hope to tell my story one day soon. Thank You and God Bless. |
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| In my book, anyone who has survived Nacrotizing Fasciitis is a "Walking Miracle", at least that is what my Physicians call me. Although I have posted numerous times before, you may read my survivor story which I have finally submitted, by clicking on the blue "Survivors" button above. Brad |
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| It's been 4 months since I got out of the hospital. Life has returned to normal. The wounds are all closed and no more need for bandages. I still have no feeling in my right leg from the knee up........Hoping to get that back sometime or another. If anyone needs to talk...feel free to email me. -Marcy |
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| hi! on feb.08,2005 i had surgery bc of NF. it was on my right upper leg, from hip to to my croin, all in all 45 cm long 8 cm wide and 5 cm deep. after serval days in icu i was moved to accute care where i got dressing changes 3X a day until they put a KCI wound vac on. i stayed 6 weeks at he hospital, had 3 surgeries, i was released to homehealthcare . to this day homeealth is coming in to check on me. my leg hurts,(i had reconstructive surgery from hip to groin, with still a hole that could not be closed.) while i was in the hospital my husband stayed with me, he is the best hubby in the world, i am recovering as well as expected. it all started with a boil on my leg |
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| I am legallly blind now because of nf it got in my blood stream |
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| good luck to everyone |
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| saw on line under myasthenia |
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| My sister-in-law has nf in her legs. Maybe from knee surgery or an injury to her hip where she fell on glass? The only anti-biotic that seems to have any effect is tetrocycline,(not sure of spelling). She doesn't have a computer right now. So I'm printing things up for her. Very Scarey. I heard of 14 children in Florida that got nf from petting animals at a petting zoo at a fair. I haven't seen the article yet, but the doc. told me about it. They all ended up with kidney problems and one had to go on dialisis. He never said if they survived. Very, very scarey. |
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| Hello, my name is Craig. Today is 4-11-05, and I just got finished watching the Montel Williams show. The (2) stories on their touched my heart. So I went to the website to tell my story. But once I got there, I beganed to feel sorrowful of the other stories that I encountered. My story starts like this. Throughout my childhood my mother have always been sickly. In 1982, at age 17, my mom was dianosed with lung cancer at the time she was only 38 years old. In 1984, less than a year after graduating HS, I enlisted in the U.S.Army. Over the next few years, my mom continued to be sick. We was always told by the Doctor that the surgery was a success. Her arms and legs use to swell up, she was in an out of the hospital 3 to 4 times a year. While in january 1989, I found out that sick was very sick again. Because I was the youngest child, my family was not telling me the whole story. One day called my mom, and she answered the phone crying. She finally told that Her doctor(the same one from the lung cancer) told her and my family that she was losing her mind, because he could not find anything wrong with her physically. He sugested putting her in a mental hospital. So she moved back home in hattiesburg,ms to be closer the some family members. She was in and out of the hospital down there as well. She borded the plane walking, just to return a month later in a wheel chair . Well, my family finally decided that it was time to change doctors. At the time, her doctor was 72 year and still practcing medicine. After about two weeks of test, the new doctor found cancer in moms brain. He said that it has been there for years, and started out as a tumor. About mid july 1st 1989, my mom had brain surgery. On july 5th at about a little past 5am with me holding her hands she told took her last breathe. The new doctor suggested that we file a malpractice suit on the old doctor. He said that the cancer would had only been a tumor if found after all these years. My dad thought that it was not right to sue a 72 year old man. A few months later I went on assignment to Europe. I knew in my heart that my family would file a suit sooner or later, they never did. After I retured from the Gulf War in may of 1991, I went home got an Attorney just to be told that I could not file a suit on this doctor. You see, mom died on july 5th 1989, I tried to file suit in sept 1991, two months over the two year statute of limitations rule. It was several years later that through Gods word, I had to forgive my family for not doing the right thing. And my teach us all to forgive those in our lives that we have and ought against. Because we are the one's living in bondage. Have a blessed day Craig C. Coleman Dayton, Ohio |
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| Thanks so much for going public. These doctors need to realize that they need to be responsible for their errors. My experience was, fortunately for me just a test/procedure, but, nevertheless, I experienced being awake during the procedure. |
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| Seen Montel Williams show and seen this. |
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| Did Montell Williams speak about NF cases recently? Please share online. Thanks, Pam |
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| Had kidney removed due to renal cell carcinoma, was told I would be back to work in about 8 weeks, its been 2 years and I still am not able to do much of any thing due to nerve damage when the kidney was removed. My left rib and up into my left shoulder is in pain after just walking a short time, I am not able to lift my left arm up any higher than shoulder level, cannot lift over my head or reach behind my back. It was 2 years April 7th that I had the surgery, have not been able to get a lawyer to take my case because I would have to prove that the doctor was drunk, on drugs or just negligent. How do you prove that the doctor did the damage? Is it too late to do anything about this? |
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| My Father passed away in January from NF. My heart goes out to anyone who has fought the battle against this diesease. God Bless anyone dealing with the loss, or battling the fight against this disease. |
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| God Bless you all from sharing your stories which are so brave,and i wish you all the best,also know that god loves you and the best is yet to come!!! |
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| just heard your speech on the montel williams show..as a nurse in both Utah...Texas I have seen lots...would like to know those questions " What someone needs to ask before" thankyou sharon |
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| SAW THE SHOW ON MONTEL AND CAME TO SEE JUST WHAT WAS THE FACTS. |
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| Death from a hemroid operation....what happened to a healthy man age 49..I feel it was the anestesia Dr.... |
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| My daughter twenty had nf was in the hospital two months twenty surgerys debried left leg,please e-mail if you would like to talk Helena would love to chat with you and be of help in any way God Bless,Helen |
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| My daughter twenty had nf was in the hospital two months twenty surgerys debried left leg,please e-mail if you would like to talk Helena would love to chat with you and be of help in any way God Bless,Helen |
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| just released from hospital after 6 week batteling nf from a tiny nail punture, and lost a large portion of right leg in the process and my heart goes out to all that have come in contact with this monster and my prayers are with you all. |
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| i too am a survivor of nf. i love your website and soon maybe i can help volunteer. keep up the inspirations. |
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| My freind Elsa Perez has had NF learning to understand it. |
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| This site is great! there is alot of cool info... |
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| I visit this site almost everyday and at times like today, I am overwhelmed with emotion. I want to thank everyone who has reached out to me since my experience with NF in Sept 2003. You have helped me to know that I am not alone, and I thank you for your prayers and encouragement. I believe that it is important now for me to give back to others. I would also ask other survivors and family members to educate people about NF. It is not a disease that just affects sick or dirty people as many believe, it is not that rare, nor is it Science Fiction. Necrotizing Fasciitis is deadly and it can attack anyone at anytime. Additionally, please do all that you can to help those who follow us in experiencing the horrors of NF. God Bless and "Make it a great day ... everyday" Pam Richards |
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| GET WELL FAST LEAVE HOPE AND FAITH BEHIND AND YOU WILL COME OUT LAST. |
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| I lost my JOEY to N.F March 23.2005. With your site I now understand more about what took him from me.When you are in a hospital an they are trying to explain that a 41 year old man has died from a Fleash-Eating-Bacteria .Someting I had never heard of. I thank GOD for your web site. I lost Joey after 13 years of marrage.He was my child hood love . An Best Friend. I MISS YOU . An will ALWAYS LOVE YOU JOEY. ( My MOLE) Thank you for your site.An God bless you all. My prayers are to all with N.F an those who have lost loved ones to N.F Thank You,Candy |
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| Nice site! I find more information. Thank you. |
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| I have hit a personal NF milestone, I no-longer need to visit any doctors, my leg is finally healed. Unfortuanatly I will always have a whole in my leg, but even that is a blessing to what could have happened to me. I have also recently found out that my doctor bills for 19 days in the hospital and 5 surguries amounted to about $75,000 dollars. I had no medical insurance during my stay in the hospital and was lucky enough to recieve $65,000 to cover some of my medical bills. I now owe about $10,000, Luckily Bucknell University has opened the "Steven Klinger Benefit Fund" at the local M&T Bank so anyone wishing to help me out with my medical bills can send checks to any M&T Branch Bank and make a donation. Please send any donations to M&T Bank Fort Augusta 1021 North 4th Street Sunbury , PA 17801 800-724-2440 Fax: 570-286-7901 |
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| hehe nice site u got here...! |
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| Hi, Thankyou for this web site. It has helped me out alot. Questions and answers?? Where do we begin?? |
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| My husband Tony-age 54, contacted NF in Jan-2005 on his left leg, beginning below his toes up to his inner thigh. He is alive today only by the Grace of God and the power of prayers along with the rapid response of medical staff after being misdiagnosed with "cellulitis". They saved his life and his leg, but it has been a very long and painful healing process. |
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| On March 19, 2005 this flesh eating bacteria claimed the life of my mother and best friend. She was a young 75 year old lady who one week prior was babysitting her two young grandchildren while their parents were out of town on business. She lived alone, just got her drivers license renewed and bought a treadmill. What started as cold and flu symptoms was finally diagnosed as Necrotizing Fasciitis. By this time she was in ICU on a ventilator, kidney's shutting down and at one point I counted ten different IV's going into her body. This whole ordeal seems like an awful nightmare and we cannot believe she is gone. My husband describes it as a five day cancer which is ironic since she beat breast cancer back in 1988. |
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| TERESA'S MOTHER CAME DOWN WITH NF ON MARCH 3, 2005 . IT WASN'T TILL MARCH 5 , THE BLISTERS WERE COMING OUT ON HER LEG , SO THE LEG WAS REMOVED AS OF MARCH 26 , IT MIGHT OF RELAPSED , WERE WAITING FOR A CALL FORM THE HOSPITAL TO FIND OUT , ANY HELP OR SUPPORT WOULD BE GREAT. THANKS FOR SUCH A GREAT WEB SIGHT ....THANKS AND GOD BLESS. KEVIN & TERESA SHELTON |
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| Cheers from Nunavut, Canada. This is a nice site. |
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| Hello everyone! Enjoying every bit of this website.....Hope all my old friends are well wherever they may be! |
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| Here it is 5 years after my "bout" with NF... As of late I have lost my gall bladder, appendix, am in a never ending battle with kidney infections, UTI's, and now have been given a dx for Multiple Sclerosis. I need to ask... was the NF a by product of the MS or is the MS a by product of the NF? Any answers would help... Leesa |
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| I HAD THE NF MARCH 9,2003. THROUGH MANY SURGERIES AND AND HELP FROM FAMILY,FRIENDS,CLEVELAND CLINIC,PRAYERS AND MY LOVING WIFE BETH, I MADE IT. MY DILEMNA CURRENTLY IS, I HAVE A 2X3 FOOT DEBRIDED AREA THAT IS STILL PAINFUL ON OCCASIONS, SORE AND STIFF. DOES ANYONE HAVE ANY RECOMMENDATIONS TO LESSEN THESE ILLS. PLEASE EMAIL ME IF YOU HAVE SUGGESTIONS. THNX MIKE |
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| I recently had the privilege of visiting your website (obviously). And I enjoyed every moment. This site is very informative and professional. |
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| I enjoy reading your site very much.Keep up the good work. |
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| A nicely constructed website. Very informative and the photos are very clear. |
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| I have just been released from the hospital after a 9 day stay and one operation. The infection occurred over a 24 hour period on my right buttock. I have had MS since 1981, am parapeligic and I have been wheelchair or bed bound for 13 years. I also have had Type 2 diabetes for the past 3 years. I have also been treated for various pressure and shearibg sores during the last 2 or 3 years. |
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| It is good to know information fast!! This is an great web site. Keep it up. |
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| my Dad a diabetic(62) is currently surviving NF after having his right leg amputated Jan 9th 2005, although he is now breathing on his own, he will be on dialaysis for the rest of his life. He is currently still in the hospital on a feeding tube for he can not swallow well enough on his own. It has been a hell of a roller coaster ride, and i dont see life becoming easier as Dads healing processes continues. Mentally i still dont believe he has fully comphrended what has happend to him. If anyone would like to share thier recovery stories with me id love to hear from you. the DR's seem to never want to give us any idea as to what may happen to my Dad down the road. Maybe they dont know????? Thanks for listening! God Bless you all who know what im going through!!!!!! |
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| My name is Lisa Davies and my father, Harvey Whitney (age 74) is now fighting for his life with NF. My parents were in Sedona, AZ on vacation celebrating there 51st Anniversay in February 9, 2005. Shortly after Valentine's Day my father started having a sore throat. On February 12, they left driving back to Cincinnati. While traveling home my father Harvey was still complaining of a sore throat, arm was starting to swell and the huge blisters starting forming. His left arm was covered with blisters. By the time they made it to Springfield, MO. my mother Tina had to take over driving. They made it to St. Louis, MO to there hotel room. Early morning of on February 19, my mother called 911. My father was delerious and not making any sense. He was taken to St. John's Hospital in St. Louis and directly sent to OR for his left arm. The skin was removed from his palm to the shoulder. Toxic shock set in and all his organs stopped functioning. He is still on dialaysis everyday recieving units of blood, plasma and on a trech for assisted breathing. February 12, 2005 he started coming out of his sleep induced coma. Dr. Pollach still trying to fight saving his arm just informed us on February 15 that the arm would have to be amputated. Today February 17 his arm was removed. He is still in ICU fighting for his life. We are hoping and praying to God that this will now save his life. I would greatly appreciate it if you could all pray for my father Harvey Whitney that he will be healed soon from this terrible disease. May God Bless each and everyone of you who has suffered and your families who have supported you. My Prayers Are With YOU! God Bless, LISA DAVIES |
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| I am doing a science research paper this year on necrotizing fasciitis- this site is a great link for the material I need. However my paper needs visuals on it....which this site is lacking in. |
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| Wonderful site. I have recently discovered my personal interest in the theremin. Now I am discovering all the information available to me. Thank you for having such a great and informative site, and taking time to share the knowledge. Most appreciated. Mike |
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| Thank you for your very helpfulsite |
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| my best friend went to the hospital and had to have open heart surgery and then she develop fluid on her lungs and now she has NF. I really wish I could be there with her to hold her hand but she is in California and the dr.'s have told her sisters to gather the family around .We have been close friends for 25 years I don't know what I'll do with out her ,she wasn't only my best friend but she has always been like my sister and it's hurt me not to me close enough to help when she needs me most.I really wish I knew more about this diease.thank you for letting me cry on some ones sholder.cathy |
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| Well done on all the great work keep it up and good luck in the future. |
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| Last time I visited this site was Dec. 2004. I can't believe all the entries that have ensued since then. Our thoughts and prayers go out to all those who have suffered the effects of NF. Because of my husband's story, I always keep a tube of antibiotic cream in my purse. People think I am crazy when I promptly clean and disinfect a paper cut - then I tell them about NF and what it can do to a person. It still floors me how many people have no idea what NF is. Until we make them more aware, I'm afraid many others will remain misdiagnosed. Donna and Jackie have been the guardian angels to many. I wonder if they knew what they were getting themselves into when they first started this site. |
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| great website very good work thank you |
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| My mom was diagnosed with nnff on Friday the 11 of march, she recieved a trauma on saturday the sixth of March. We took her to the hospital on tuesday because we thought she was having a stroke. She was admitted into the ICU unit for an infection in her arm and was given alot of strong antibiotics. The infection seemed to get worse and she was not getting any better. My mom was brought into surgery because the infection was going to her lungs. They had to scrape off her dead tissue. SHe was put on a ventilator for 2 days. As of right now my mom is still on the ventilator and we are hoping that she comes out ok. We had no idea what was happening and it hit my family hard. this has been a very hard week and it will be a very long struggle for my mom and my family. I will update the guest book when I know more about my mom. |
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| Your site is perfect, will visit it again ... |
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| Telesgop Television in Wales, UK, is developing a documentary program on Necrotizing Fasciitis. We have backing from Discovery Health US, and are currently looking for additional funding for the project. I would like to feature people in the program who are re-building their lives in the aftermath of NF, both in the US and in the UK, and would love to hear from anybody wanting to take part in the documentary. I'm afraid that whilst I would not be able to guarantee that your story would be featured in the program I would really appreciate the opportunity to talk to as many people as possible about their experiences. I can be contacted on branwen@telesgop.co.uk or on +44 (0) 1792 485545. Teledu Telesgop Television, Technium 1 - SA1, King's Road, Swansea, Wales/Cymru, UK SA1 8PH |
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| No Comments.Is the great site i ever visited.Keep doing this great job which helps peopls. Thank You |
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| My aunt just passed away of NF. We were told she originally had cancer but that NF is what killed her. |
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| I love this page. It looks really nice. Keep it up |
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| My sister has just been diagnosed with NF after having a ceasarian. I had heard of the disease before but had never really had a reason for learning more about it. I was terrified for her life in the beginning, but after reading all your survivor stories I can honestly say I am now feeling more positive for her. As I write she is still in hospital and has a long tough road ahead of her. But she is strong and I know she will soon be home with her new baby. Thank you for giving me hope |
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| I am so glad I found this site. I needed to get my story off of my chest for a long time. Thank you!!!!!! |
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| A few months ago I had really athlete's foot on the bottom of my right foot. It had led to fissures and allowed staph bacteria to enter my foot. At first I developed cellulitis, a red streak formed on my foot, pointing towards my heart. Almost all three of my dermal layers basically were chewed away by this nasty little bacteria. After a week and a half of 2,500 mg of antibiotics a day, it finally went away. But my skin appeared as though it did not want to grow back. Fortunately, after a couple of months it has finally grown back, but now I have a form of eczema. I was on cruches, and was not able to use my right foot for over 2 months. I seriously thought the chance of losing it was quite plausible. I have learned A LOT from this experience. Put polysporin on those cuts, and don't take life or anything for granted. My heart goes out to those who had it worse. God bless! |
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| i need contacts abroad in a related profession. Be a friend |
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| E-MAIL ME IF YOU WOULD LIKE TO CHAT i AM TWENTY AND SURE WOULD LIKE TO HEAR FROM YOU .GOD BLESS Helena South Carolina |
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| I found this site after surfing google What a highly inspiring and dedicated site! I really appreciated and say thank you for Keep up the great work online....! |
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| love the site always come back love ya |
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| NICE JOB YOU HAVE HERE THANKS |
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| Great site! You're providing usefull info to the world. |
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| My dad just went in today and he's currently in the hyperbaric chamber. The speed at which this hit has just blind sided me. I have realised two things today. I am not as stoic as I wanted to believe and I love my dad more than almost anything. Thanks for those who put stories up it has given me hope. |
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| I just wanted to thank you for this site I was looing up information about NF. At this moment I Know of a young woman in my family who is fighting for her life in the ICU in Cincinnati, Ohio. She is a beautiful 30 something with a young daughter. Today her husband and her parents had to make the decision about aputation of her leg. She is on a respirator and her kidney's I believe are starting to work again. We are all saying many prayers for her and her family. Her name is Peggy, so, please say a prayer for her. Thank you. |
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| Cool site, keep on working...will visit again.... |
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| You have a well put together page God Bless you |
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| I am also considering a lawsuit against a clinic in east tennessee. anyone know an attorney with knowledge of NF? |
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| I would love to share my experiences with the wound vac |
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| I recently sign the guestbook about my father having being diagnosed with NF. On February 17th, 2005, I lost my father due to the disease. My father was admiited to the hospital November 2004 due to a car accident and while at the hospital he developed the disease that took him away from me for the rest of my life. My father was only 57 years old when the "Lord said come servant, job well done". On that day, I felt my heart being ripped out of my chest, because I am a Daddy's girl and have been for the past 32 years and will be forever. I wish their was a way that a cure could be found so that no one else would have to loose a family member from this disease. |
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| I'd like to thank you. There's never enough preservation of knowledge. What you've done here is invaluable. I hope it serves many over time and brings you much satisfaction. :-) |
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| I am a NF survivoir |
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| While I was in the hospital last year with NF a friend gave me a book (Book of Comfort) that was a compilation of inspirational sayings by various people. I read it many times in the hospital and many more since I have been out of the hospital. Each time I start feeling down about what happened or scared that it will come back I remember one of my favorite sayings from the book....I bend but do not break. (Jean de la Fontaine). To everybody out there suffering or recovering, I hope these words have meaning for you to. |
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| DIANA BERTRAND if you read this, please e-mail me with a a different e-mail address. I can't get through with the one you sent to me. THANK YOU |
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| my heart goes out to the people who are dealing with this horrible condition, my heart and respect to those who have overcome this too. god bless all who are trying to help these people. |
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| I had lost my uncle 6 days after his 40th birthday in 2002. And then in 2004 I had lost my father to the same disease he was 46. They told us it was one in a million with my uncle. Then we were all stunned when My dad ended up in the hospital for the same thing. It has everyone in my family scared that it will happen to them to. It was hard enough losing my uncle to it. I still wasn't over his death when my father went in. I had to watch him die holding my hand. I still have nightmares from it. It is finally good to talk about this stuff with people that have and are going through this. best of luck to all of you. GOD BLESS. |
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| Hi, I'm French and I love your website, you must have done an hard work to create it and I want to say you that your site is wonderful, thanks for your excellent work and good luck for your next creation ;o) |
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| It is coming up a year since I got this terrible life changing disease. I am still struggling to recover, the road is long. Thank you for making me like I am not alone. |
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| I would like to thank the people of NNFF for having a great informative site. I was recently diagnosed with NF in my right leg, subsequently I've undergone 5 operations and have been released from the hospital. I still have a large open wound that I dress twice a day. I originally had 3 open wounds 2 that have already closed up with the last wound being over a foot long 3inches deep and 2 inches wide. I feel fortuanate to be alive and able to walk, now all I have to do is figure out how to pay all my doctor bills!!! Thank You once agin for you informative web-site. |
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| Great site ive learned lots keep up the good work |
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| My mother was diagnosed with acute leukemia 1/20/05. She had her first 5AZA treatment and the port 1/25/05. She developed necrotizing fasciitis around the port. She had surgery to remove skin to the muscle. About 3 hrs. later the area around the new temporary port was also infected with this disease and back into surgery. She had 7 hiberberic oxygen chamber treatments which stop the growth but without platelettes she is unable to heal. She is now on life support and has other infections. Had to have a "trac" put in the throat. She is responsive and has very little pain. We have been told there is no chance that she will survive this. I was looking for some info on this and came across this site. Thank you, it is very informative. |
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| Dear NF survivors and families, I request that those of us who have experienced NF first hand as a victim or loved one, not be discouraged, influenced or distracted by people who would use this site for personal gain. nnff.org is our link to one another, an avenue of support and understanding. This site has been so important to my recovery as an NF survivor. I check the site daily and respond to others when it seems right as others have to me. NF is not going away...please speak up and out to inform the public. Choose to make a difference. Make it a great day ... everyday! Pam |
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| nice web!!god job!!!thank you!!!It is very much fun for me to look at it from the time to the time, you've created a very good site and i found a lot of interesting,and good information on your site ,best greetings to all your visitors ,do it more ,do it better , thanks!! |
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| My brother, Paul Visyak, was misdiagnosed twice and passed away on 2/15/05 from this horiffic disease. Maybe if a doctor instead of a physician's assistant looked at him when he first went to the hospital he might have lived. |
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| In April of 2004 I went to the hospital to give birth to my second child. I had an easy pregnancy and an easy labor. We were so happy to welcome a son into the world. This was Friday. By Monday morning I was on my bed in the hospital in septic shock and all I remember were people screaming that they couldn't get a pulse and where the heck were the doctors. I spent 8 weeks in ICU - going through all the horrible stuff that others have been talking about (kidney dialysis, 3 weeks on the ventilator, a huge gaping wound in my thigh and groin, and painful dressing changes until they put a womb VAC on me). Worst of all I didn't get to see my son until 4 weeks after his birth (and this was for about 1/2 hour because I just didn't have the strength to even hold him). After months of rehab I am physically recovered and am happy being a mom to my now 10 month old son and my 3 year old daughter. In early March of 2005 I will be going back into surgery to remove my left kidney and place my permanent colostomy - this is the last remaining serious stuff I have to go through. Unfortunately this experience has left me with this thought: One cannot take for granted anymore that going to the hospital also means coming home from the hospital...wish me well in March! |
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| i have only looked at this site a few times and the information i have gained has been tremendous. i particuarly like the extensive cross refrencing (though i do find that i forget what the hell i was looking at originly!)I have bookmarked this page and will be a regular visitor. This site is either a labour of love or written by a team of celibate Tibeten monks! :) |
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| My mam died of NF last year, its hard to explain the effect that its had on my life and the life of my four younger brothers, we are all under 25 and the younger boys are only 10 and 11. thank you for this website and for providing people with much needed information and support. |
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| my mom is in the hospital now with NF. It started in her groin and moved to her buttox and her stomach and back. please pray for her! |
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| I loved your site, and I'm sure that it'll bless the life of many others people like it did for me. |
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| I loved your site, and I'm sure that it'll bless the life of many others people like it did for me. |
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| I cannot visit this site without bawling my eyes out every single time. I want you all to know that because of this very site, I have decided to become an infectious disease physician. I will always be looking at this site and praying for you all. You are all so brave and wonderful. |
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| I HAD IT IN 2000 IN HOSPN 3 MO. |
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| My wife died of the dease in may of 2003 and my step son put a decation for her on this site this is a beatuful service. |
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| Just wanted to update everyone! My wounds are almost all closed up now...I'm walking normal, and the pain is all but gone! Yes, my leg looks like a roadmap, but I'm alive and I still have it!!! Thanks everyone for all your supportive emails and comments. This site has been so helpful to me as I recovered....take care. |
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| I have just got home from hospital and I am recovering from an NF attack on my left leg. Good to see your site! |
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| I loved your site, and I'm sure that it'll bless the life of many others people like it did for me. |
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| I found this site after surfing google What a highly inspiring and dedicated site! I really appreciated and say thank you for Keep up the great work online....! |
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| Just browsing the internet for info. on post-hysterectomy |
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| Today is the 5th anniversary of the funeral for my dear baby grandaughter Hailey who succumed to this dreaded disease on Feb. 2, 2000. Right now I am so angry at the Doctor's and the medical profession for misdiagnozing her that I feel I am losing my mind. No one should have to suffer the horrible pain this baby suffered and no parent should have to suffer the agony of losing their newborn baby to such a horrible affliction. It's so sad that CDC does nothing to find a cure or investigate this dreaded sickness. My hearfelt condolences to all who have suffered and to all who have survived I know you have a new outlook on life. May we as a group continue to speak out out NF and get the public aware of this dreaded and deadly disease. |
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| My father went into the hospital for a car accident in November 2004. During our stay at the hospital we was in the ICU unit for a month and then transferred to another floor. Well we thought that all was going well for my father, until my father developed a perirectal abscess and was told nothing to worry about. After, being taken down for surgery,they discovered that gangreene had set in and to be very drastic in order to get it all. During this stay in ICU we thought that was the end of our problem and was transferred to the floor for the second time. Being on the floor we felt like that was the end and next thing that we knew, I was getting a call stating that my father was ill and needed to go through a more aggressive surgery in order to save his life. At this point my father have what they call necrotizing fasciitis and have to go in and remove it or he will die. My father was slowly fading away and it was like he was dying and the only way to save him was to have the surgery and pray for the best. I did not know that much about the condition and did not realized how close this bacteria was until now. I had heard about this condition about five or six years ago with a man that had this disease in Texas. Since, this has happen to my father, I have really began to take notice and learn all that I need to know about the disease. I have even order the book on the disease and hoping to gain all the knowledge that I need to know. |
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| I feel sick with guilt when I think about all the times I have complained about occasional aches & pains. I am truly blessed not to have suffered through the pain and loss that the victims of this dreaded disease have. May God bless each and every one of you! |
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| My fathers story was recently added to this website. His name is Richard Boehm. He is one of the most caring, loving, and strong man i have ever known. His condition came as a shock to our family who had thought it to be something along the lines of the flu. Without the staff from Edwards hospital and all the specialist who came in to help my dad, i probably would not be writing this right now. The worst part about this whole ordeal was getting a call after football practice that said i needed to be in the hospital because this was the last time that i might get to see my father. Nothing really hit me until the doctor came in and started to talk about the surgery. My dad's courage gave me the strength to continue on in whatever i apply myself to. To those out there who are just experiencing this or have already, be strong because it makes those around you that much stonger. This whole chain of events has changed my life and views on it. You never know how good you have it until something bad comes along and wants to take it all away. I love my family and my dad for being there for me and beign strong through a rough time. There is hope. Keep praying. |
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| My mother is currently recovering in Macon,Ga. I am looking for any info on recovery. |
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| I am having a hard time dealing with the fact that my father have NF and is scary. My father is 57 years old and was involved in a car accident in November 2004.From the car accident he had a broken neck along with his other medical history. Now, my father had to go through massive surgery for NF bacteria and trying to heal from that as well along with his other injuries. I do not understand why this has happen and with all his other medical problems, will he have a postive outcome from it all. |
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| I just found this website today, Feb. 8, 2005. I, too, am a survivor of this condition. Without the surgery I had on Sept. 18, 2004, the doctor said I would not have lived to see another day. I was moved to 3 different hospitals over a 3 day period because 2 of the hospitals would not permit the surgery. I was so disoriented, I had no idea of what was wrong with me or how near to death I was. Not only did the doctor save my arm, but my life as well. I am pleased to see there is a website dedicated to NF. I am interested in learning as much about this condition as I can and to help others going through this life threatening ordeal. Thank you |
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| thanks for this web site i'm still dealing with the emosional truma related to n/f it has been a terrible rough road since i started recovering just to know there are others out there that know what the deal is helps. sometimes i still feel really alone my family and friends try to understand but this site is great. |
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| Our hearts and prayers go out to every single individual who has experienced this horriable disease. |
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| My anut died last week of Necrotizing Fasciitis it was unexpected we had know idea that she had it we didnt even know what it was so i started doing rearch on it and thats why im here. "WE ALL LOVE YOU ADLENE" |
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| my husband has copd |
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| i WAS DIGNOSED WITH nf sometime in May 2004 I was neutropenic due to chemo because I have leukemia all of my counts were at 0 basically. I don't know why I lived the odds were 100000000000000 to 1 in favor of NF and cancer. I will post my story soon |
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| My friend dyed on Jan. 22, 2005. I miss him. His name was Ryan. I was in the room at the last moment of his life. He said,"I see darkness. Let me go...I see God looking at me.I will always be your friend..." He then went into a coma for a week and died. I will always remember him. |
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| My friend was dead when I was 10. Nothing can change that. It has been 75 years and I am still remembering you. as you always said- I'll be your friend forever and ever! |
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| My mother who is 74, fell ill with NF on December 27th, 2004. She has it in her left arm, from fingers to elbow. It came upon her so fast that she became septic. She suffered a cardiac arrest event but has managed to survive all of this. She is currently still in ICU since that day, is in a coma, and will undergo her 3rd surgery on her arm. She miraculously fought against very difficult odds, and is physically improving. But we don't know if she will ever come out of her coma. Her family waits and prays and hopes that she will wake up someday. What a frightening and horrible disease this is. We may never know how she contracted it. God Bless all of you who have suffered as a result of NF. |
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| "We had joy we had fun we had seasons in the sun, but like the wine and the sun, our seasons are all gone." Today marks one year since you left us so suddenly. My heart races and my stomach is sick. I dream of the day that we can talk to each other again and joke around. I would give everything I have to hear your voice just once more, if only to hear you laugh. Although, you are healthy now and in a much better place, I selfishly want you back with me. My hearts hurts your absence and I want you to know big brother, That I will always love you and miss you..... Remember when we were far apart, you in Seattle and me in KC, looking at the moon and stars knowing you saw the same ones helped me when I was down and missing you. Now you are one of those stars and your light will forever shine bright. Kiki |
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| My husband contracted NF in April 2003 and he is going to have his fifth skin graft this Friday 1-28-05. The first one most of it took, but the other three have been 100% failures. I have been reading the survivor stories and my 8 year old daughter would like to learn more about it, but some of this is hard for her to understand I wish I could come up with someway of explaining what NF is for her to understand. |
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| Sondra Lynn Perry DiGrazia. Born March 5, 1969, died of NF on Oct. 30, 2004 in Elgin, IL |
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| Our vibrant and healthy daughter, 35, mother of 3 small children, died of NF on Oct 30, 2004. She thought she had the flu and just grew weaker and weaker for 3 days. Her husband took her to the hospital on Thurs. (4th day). She complained of a very painful arm. The Dr. said she'd probably fallen or hit it on a door jam and just didn't remember it. He treated her for dehydration, and when he did bloodwork to check her electrolytes, no one bothered to suggest doing a blood test for Strep A. (They had done a throat culture-- but the bacteria was not in her throat-- it was in her blood). The balance was not good, so he admitted her. Still no one looked into flesh eating disease as a precaution. (The hospital had had an outbreak of NF just 3 years before ...). The Dr. with infectious disease waffled back & forth, yes, it was strep A, no it wasn't. In those precious 12 hours, her arm went from a small "bruise" on her bicep, to being totally consumed by the flesh eating disease. She died a painful, death 18 hours after being admitted. She was a dedicated mom to her three small children, home schooled the 7 & 5 yr old, and doted on her 2 yr old son. He husband is in shock and doing the best he can. It is taking 2 grandmothers and a very close family friend to provide the love and nurturing for them that she had given to them herself. Marilynn Perry, her aching mother. |
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| fowl smelling discharge w/o itching, smells like rotten fish |
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| Jim Bletzacker was a wonderful kind hearted man and is missed greatly |
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| I would like to say, that my heart, hopes and prayers go out to everyone; who like me has lost or watched someone you love suffer from this debilitating, horrifying disease. It will be one year on 1/24/05 since the death of my brother. I have received some very caring and heartfelt emails from others who read my previous guestbook entry and dedication. I would like to say thank you to all of you. Also, I intend on submitting a new dedication in the next week or so one where I honor my brother and not the disease. I believe if we all stand up with one voice to the medical community, lawmakers, writing to newspapers, magazines, etc. we may be able to help one person elude this deadly disease. Before my brother, I thought this was an Alfred Hitchcock type of SCIFI infection that would be found on the front page of The National Enquirer. Education is the biggest offense and we need to make sure that our doctors, nurses and hospitals are aware of the symptoms and act accordingly. All my best to each and every person and family affected by NF, you are all in my thoughts, prayers and heart everyday. |
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| My husband was diagnosed with NF in March 2004. Thank God the surgeon in the ER was familiar with this disease. He was in surgery within 2 hours of us getting to the hospital. He had 3 surgeries and hyperbaric chamber treatments. He is doing fine now. We have no idea how he got NF. |
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| Had n.f. |
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| i am doing a project on NF and hope the best of luck to all!!!!! YOU CAN DO IT!!!!!!!!!!!!!!!!!!!!!!!!!!! good luck and god bless you guys!!! |
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| At http://www.strep-throat-symptoms.com we tell you why you should avoid Emergency Rooms when you have throat problems such as flu because the exposure to other infections when your immune system is already compromised can lead to such serious illnesses as Methycillin-Resistant Staphylococcus Areus (MRSA) and NF.. |
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| My 37 year old husband had NF and the resultant toxic shock in May 2003. His disfigured arm is not so much the problem. He has chronic pain and numbness in his feet, legs and back from nerve damage. He still takes oxycontin and neurontin to manage the pain. Has anyone else experienced this? How can I help him? |
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| I had N.F. in Aug. 2004. It took 10 days for my Dr.to send me to the hospital to a Dr. who found out what was wrong with me and it was almost to late. But thanks to Dr. Mayo and the infection Dr.s at Westerh Baptist Hospital in Paducah Ky they saved my life. It took 2 weeks in a coma, two more weeks in the hospital and I am still having trouble with my health.But I will over come this !!!!!! |
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| My boyfriend recently had his right arm amputated because of Necrotizing Fascitis |
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| i suffered and servived and know how scary it still is when i have a sore throught or a stange mark on my body.congradulations to all who have servived and my deepest soarows to the people and family's who have lost their lives or the lives of a loved one. |
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| i suffered and servived and know how scary it still is when i have a sore throught or a stange mark on my body.congradulations to all who have servived and my deepest soarows to the people and family's who have lost their lives or the lives of a loved one. |
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| To S. Jeffers - I understand your feelings about a misdiagnosis. Truly!!! Please also keep this in mind. This is a rare condition that effects approximately 1 in one MILLION. I know (because my mother worked in the health industry for 15 years) some people that are disease specialists and have NEVER seen this in their career, although they know plenty about it. When my son was diagnosed last March, it took over 25 people looking at him before they knew what it was. The only reason they were able to figure it out so quickly (6 hours) is because the urologist that was called in had seen one case of it before, approximately 15 years ago. This is not a cold, flu, broken bone etc. that is easily spotted. It is an invasive bacterial infection that rears its ugly head and not many people in the health care profession will ever see it in their entire career. My son's intensive care nurse has been working in the pediatric ICU for 30 years. Trevor was her first experience with this. I wish you all the very very best, my prayers are with you and your family. |
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| I have a dear friend whose father has been diagnosed with N.F. He is in the hospital in Tyler, Texas fighting for his life. Yesterday, he had surgery and the doctor had to remove his penis, both testicles, colon, rectum, most of his bottom and the skin from his waist to his knees. They are struggling to keep his blood pressure up and need to do more surgery. The family has been asked if they want to let him die or take the chance on more surgery? For those of you who are survivors, would you want the chance to live even after such extensive damage? He is 80 years old. Does anyone know of a specialist in Texas who the family could consult? Thanks for any suggestions! |
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| Just wanted to give an update on my Husband John who got NF in May of 2003. He is still battling this horrible disease he had 3 incidents of cellulitis that necrotized and hade to be debrived. Who ever gets this DO NOT GIVE UP HOPE. John died 5 times and he is still here today by the Grace of God. Fight this with your every being and ounce of strength that you have. My Prayers to all. |
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| After reading your story over again, though, S. Jeffers, it seems the nurses were foolish. I don't know though, I'm not a lawyer, I'm a freshman in high school. Just my two cents... |
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| Also, Jeffers, the first surgeon actually performed the surgery he/she was going to perform apparently without any mistakes, so you can't get them on that surgery. |
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| E. Jeffers, it wouldn't be fair for you to take legal action against this doctor, and for one reason. THEY'RE AN OB/GYN! They are not a skin doctor. They do not specialize in skin. That being said, you stand a good chance of losing any case you present. The only thing you could actually accuse them of is not referring you to a specialist or a surgeon. I'm quite sure a specialist would have no problem diagnosing this, and a surgeon probably wouldn't have much trouble either. NOT RELATED: I looked at what my Bayer cream is made of. 10% Menthol (a lot), and 4% Camphor. For those who don't know, camphor is similar to menthol, and is often used in poison ivy/oak/sumac ointments. I know this because I have had poison ivy many, many times, 4-5 times of which it was on my face and even got into my eye a couple times. Had to take steroids at that point. Anyways, though this doesn't work as well as it says for muscle aches, if you have an irritated area of skin (itchy, hurts, etc.), it cools it down very quickly. And it lasts. Hope this helps. |
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| Someone asked how contagious NF is. I'm researching it, so I'll try and answer. The actual bacteria is quite contagious -- in fact, you have it on your hands right now! It is very unlikely, however, that it will develop into NF. It is the same bacteria that causes strep throat. Think of a strep throat sort of disease in the tissue of your body. That's pretty much what it is. DO NOT HESITATE TO SEE A DOCTOR IF YOU EVEN MILDLY SUSPECT YOU HAVE THIS. |
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| Someone said that they use cream because of their foot which was infected with NF, or something. I don't have, never have had, and don't know anyone who has had NF, but I lift weights very often... and I am sore when I come back to the weight room after a long break, such as Winter Break, or Spring Break. Anyways, when I'm sore, I use Bayer Extra Strength Joint and Muscle cream. I don't know what it's got in it besides menthol, but it really does make the affected area feel better. It's not the best smelling thing in the world... anyways, it dulls some of the pain. I don't know if this helps or not. I just saw that someone is using a cream/lotion/ointment, and I figured that I'd post about one that I use. |
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Copyright © 1997-2003 National Necrotizing Fasciitis
Foundation (NNFF)
All Rights Reserved. May 14, 2005 |
