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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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My name is: amy Comments about the web site: I am a high school student researching Necrotizing Fasciitis for a Biology project. before your web page I didn't even know what it was. This information has helped me greatly. I will remember this every time I get a cut. I think it's wounderful that you are trying to get this information out to people. I'm from: El Cajon California Email: - How I found the page: - My name is: Scot C. Wiles Comments about the web site: I too, was a survivor of this deadly disease. I'm from: NC, United States Email: - kain54@netsanity.com How I found the page: - research on my disease My name is: james cornelia Comments about the web site: i found this web site while doing a school related project, and i have found it very informative. thank you I'm from: sioux city, ia usa Email: - How I found the page: - aol search My name is: Mushtaq Comments about the web site: i was not aware of this disease before my science project, but now that i know more about it i will make sure everyone is aware of how deadly it is. I'm from: Vancouver, British Columbia, Canada Email: - How I found the page: - yahoo My name is: priscilla chechotka Comments about the web site: my 7yr old daughter got NF when she had the chickenpox I'm from: boynton beach florida usa Email: - aggie63@aol.com How I found the page: - friend My name is: Comments about the web site: Well as previously stated my mom did not have a collapsed lung, just water on her lung. That is all cleared up now....and she has been moved back into a regular room yet again! Hopefully this time she will stay there until she leaves the hospital. The doctors say her wounds are closing up quite nicely. For those of you that would like to send her a card or note, take a few minutes to do so....I'm sure she would greatly appreciate it....I have her new room number updated as of today....... Resurrection Medical Center Gloria 7435 West Talcott Ave 2WEST room # 238 Chicago IL 60631 Thank you and Godbless everyone If you have any questions about NF just send me an e-mail. I'm from: Chicago IL USA Email: - Gdog Gdog Gdog Gd How I found the page: - have it bookmarked My name is: Comments about the web site: my e-mail address below I'm from: Email: - Poochie78@aol.com How I found the page: - My name is: Chris Comments about the web site: I are doing A project and I was Worndering if you can tell me who discovered the virus and when? If you can tell me any thing can you please send some infomation to my E-mail. I'm from: Canada Email: - flameboy_110@hotmail.com How I found the page: - Jeeves My name is: Lola Sacora Comments about the web site: Good site, What does pathogen mean? I'm from: Email: - How I found the page: - My name is: dana noble Comments about the web site: I am doing a report for my Medical Assisting class, and I am very intrigued by the power that bacteria has. I Thank everyone for their information, and especially those who have come on to the internet to tell their stories. Thank You! I'm from: Flagstaff, AZ Email: - How I found the page: - My instructor gave me this idea to do my report My name is: Chinka Kolita Comments about the web site: I was womderimg where in the world the flesh eating virus is found? I'm from: Email: - How I found the page: - My name is: Nancy Wiggins Comments about the web site: i am also a survivor of the flesh-eating virus. it has been almost 6 years for me. the virus started under my right breast. it started out as a white discharge and it had gotten to the point where i couldn't lift up my right arm. one day i didn't wake up and my 3 children were in the house getting ready for school. my daughter tried to wake me up but couldn't. my husband (bless him) was at work and came home i was in bed unconscious with a 104.5 fever and blitters on my right breast. he said that he could smell the infection coming out of me. he rushed me to norwalk hospital where i was treated by dr. ralph crum along with many other doctors whom i am so greatful to, but most of all i am greatful to the lord above and my husband whom i love dearly. i was in the hospital for 3 weeks. the doctors did not expect for me to live as a matter of fact i died twice and was brought back. when i finally did wake up i had been in the hospital for a week. the virus had moved up into my right arm and back. my right breast was removed and i have scares on my arm and back. i thank god for me being here on earth today. i look at life in a different way and take one day at a time. yes, i am scare that this will happen to me again but i pray that it won't. i would advise anyone who gets a sore to get it checked out do not let it go. thank you. I'm from: norwalk, ct Email: - How I found the page: - searching My name is: Regan Rogers Comments about the web site: Great i'm a nursing student Very informative! I'm from: Canada, Victoria BC Email: - jrcae@hotmail.com How I found the page: - My name is: Linda L. Massey Comments about the web site: I live in small town in a small County in Kansas and a friend of mine came down with this, she survived but lost her leg. I'm from: Lyndon, Kansas Email: - How I found the page: - From an article I was reading. My name is: Elizabeth Stone Comments about the web site: On February 2, 2000 my 16 day old baby girl, Hailey Elizabeth Stone, died from NF. She was admitted to the hospital on a friday and passed away on tuesday morning at about 1:45am. She caught this infection around her navel. She had three operations to remove the dead skin but none of them worked. After the third operation she had no skin from her pubic bone up to her breast plate and down her sides. I belive she could have been saved if the hospital hadn't been so negligent. My daughter has been gone for 10 weeks and it's not fair. I really feel for everyone who has lost a loved one to NF. This experiance has made me look at life through new eyes. I feel the worst for my 3 year old son because he just doesnt understand why his baby sister isn't at home and why he cant go see her in the hospital. He crys for her all the time and I really dont know what to say to him. My husband turned himself into an Alcholic over her death and I am on Zanax all the time. If anyone has words of wisdom or would like to talk please e-mail me. I think I could use someone who knows first hand how I am feeling and why. I'm from: Anaheim, California, USA Email: - brat5150@hotmail.com How I found the page: - I didnt it found me. My name is: Barbara Ray Comments about the web site: A friend's sister is in the hospital with this as we speak. Her odds are 50/50 and they are talking dialysis tomorrow. I found this article in the Ladies Home Journal and then came to your web page. Keep up the good work. I will be sending a donation. I'm from: RedOak, Iowa Email: - terryra@redoak.heartland.net How I found the page: - The magazine article My name is: Debby Siegel, Granby, Ct 06035 Comments about the web site: Today,April 13th, marks my one yearanniversary of the 5 surgeries to heal my body of this disease. How bessed and fortunate I feel to be a survivor. I wish to thank you for the information of/about what happened to me. I'm from: Granby, Ct. Email: - unclemother @ web tv.net How I found the page: - I searched, wantiing to know more.. My name is: Julie Kleban Comments about the web site: I got the flesh eating bacteria in a hostpital giving birth. I'm from: San Diego CA USA Email: - Jkleban@pobox.com How I found the page: - Internet My name is: BEVERLY FUQUA Comments about the web site: I AM GOING TO SEND YOU ANOTHER DONATION. IT WILL BE IN MEMORY OF JIM DOUGLAS. IT HAS BEEN TWO YEARS NOW ANDIT SEEMS LIKE YESTERDAY. KEEP UP THE GOOD WORK. I HOPE THIS DONATION HELPS. I'm from: DENVER, COLORADO Email: - L4805@aol.com How I found the page: - It is listed under my Favorites because I refer to it so often My name is: connie beovich Comments about the web site: I had necrotizing fasciitis in 1990. Was in hospital 5 weeks. 2 surgeries. nearly died. Started with sore throat. Went to doctor that night. Not diagnosed until 3 days later despite numerous visits to several mds. No cuts on body. Entered through abcess in throat(?) I'm from: franklin square, ny usa Email: - beowolf49@aol.com How I found the page: - ladies home journal article My name is: Barbara K. Gatewood Comments about the web site: God bless you for this wonderful website to inform the public on this terrible disease. This is also an awesome place to connect with others who have been through this same experience. Last June, I had a paper cut which became infected. Due to the quick actions of my doctors, I had 5 surgeries in 8 days and over 120 stitches in my left arm. Needless to say, I give God the glory that I still enjoy His beautiful earth. I'm from: Hamilton, VA Email: - gatewood_b@mediasoft.net How I found the page: - Looking up information on NF My name is: Theresa Freeman Comments about the web site: I just found out that my uncle has the "flesh eating disease" he is at this moment in the hospital in california in critacal condition i guess all we can do now is pray! He got NF in his throat first and has spread to other areas we are just praying rigth now that it will not take his lungs, ect.....please if their is anyone out there that can help us to understand this disease please e-mail me I'm from: Washington state , USA Email: - TNF25@HOTMAIL.COM How I found the page: - on a web search My name is: Sheila Le Comments about the web site: Thank you for this web page. It will prove to be useful and helpful for my school project for biology. Once again, thank you very much. I'm from: Canada Email: - celsi_2000@yahoo.com How I found the page: - I used Yahoo Search. My name is: KAREN MULLER Comments about the web site: VERY INFORMATIVE, THANKS FOR ALL THE WORK I'm from: AUSTRALIA, QLD, TOWNSVILLE Email: - How I found the page: - My name is: Pastor Ralph Cole Sr. Comments about the web site: Our church is currently praying for one of our former member's whos is laying in the hospital unconscious, fight for her life at this present time 18 Apr. 2000. Thank You for the education. God bless you folks. A Servant of Jesus Christ Pastor Ralph Cole Sr. I'm from: Des Moines, Ia Email: - WordofGod@Juno.Com How I found the page: - The husband told me about your Web Page My name is: Steve Wright Comments about the web site: NF could stand for No Fun, but that would be the understatement of the decade. Thanks to the Emergency Room doctor and nurses at Salem Memorial Hospital (Oregon) and a very good anesthesiologist (and of course surgeon)who kept me alive when I was in no shape for extensive surgery, I am a survivor of this disease with the scary name. Since this is a guest book registry, I won't tell my whole story here. I am glad to see this site. I wish I had discovered it much earlier. I contracted N F in my left buttocks and it traveled down the outside of my thigh and spread to just above my knee and wrapped around to the inside of my thigh and was in the groin area just as they finally decided to take me in to the operating room. My family was told after I came out alive, that they thought going in that I had about a 20 percent chance of making it. This was on February 4, 1994. I believe I was the second case, possibly third, that they had seen at that hospital since the first of the year. A diabetic man had been admitted around two weeks earlier with it. I really had no idea during the six weeks I layed flat on my back in a hospital room, just how lucky I was to have survived this thing at all, let alone had enough of a leg left, after two surgeries in two days, to even stand on or actually walk on. I didn't feel so lucky while going through this ordeal. After finding out how many people don't live through this, or suffer extreme life altering losses of parts of their bodies that were ravaged by this infection, I feel very lucky now. Thank you Jackie and Donna for this web site!! I'm from: Dallas, Oregon, United States Email: - sgwrigh@uswest.com How I found the page: - just did a search for necrotizing fasciitis My name is: Colleen Holland RN Comments about the web site: I was on my 3-11 shift tonight at the hospital and had anew patient from our ER admitted to my floor. At first it was unknown what this patient had. It turned out to be necrotizing fasciitis. This patient had undergone chemotherapy a week ago for lymphoma. The patient had one bout of chemotherapy. He showed up in the ER today with a small sore on his right thigh. This was at 11 am. When I cam on and the patient was transferred to me it was 4:30 pm and his prognosis was grim. He was essentially sent to our floor (a cancer floor) to expire. We were to make him comfortable. He was gone by 6:15 p.m. His family had no time to adjust to the death or the fact that he was even this sick. I have never seen such an agressive disease, and I have seen many. It has opened my eyes to this and I will pass the word on. I only wonder if this disease is something that health care workers should worry about getting as well as passing on to other patients. I'm from: Parma Heights, Ohio Email: - gogirl37@aol.com How I found the page: - by accident by browsing My name is: Bernadette Kovac Comments about the web site: Contacted the disease in March of 1997 after surgical procedure, had seven debridements of the abdomen and had to retire from the Fire Department with a Disability Pension I'm from: Kansas City Email: - bernie131@yahoo.com or bernie13@usa.net How I found the page: - looking for NF cases in my area My name is: K, Perkins RN,C Comments about the web site: I am a survivor of NF and will complete your survey. Yours is the only extensive information I could find on the internet. I developed NF following abdominal surgery and am interested in hearing from others who contracted NF in this manner. Thank you very much. I'm from: Louisiana Email: - Kpurrkins@aol.com How I found the page: - researching streph A My name is: susan longenecker Comments about the web site: My mother died from this illness. It was a horrible painful death for her. It was a horrible thing to watch. She died within 24 hours of diagnosis. I'm from: westerville, Ohio Email: - susanrene@earthlink.net How I found the page: - my sister told me about it My name is: Lynne Frickelton Comments about the web site: My husband is still in hospital after an accident on a snowmobile on 10.2.2000 whilst on a business conference in Toronto. His original injuries of broken pelvis, arm, ribs etc, were complicated after one week in a Toronto hospital by contracting N.F. He was not expected to live, but is still here (back in England now). He is presently undergoing alot of plastic surgery to his right trunk and has had to endure a series of setbacks along the way, including surgery to his bowel and bladder, but he is now making good (but painful) progress. This web site helped me in my hour of need in Toronto. I had flown out to be with him and ended up at his bedside for a month. A nurse at the hospital printed off the information from this website on the day he was diagnosed, and it reconfirmed what I already knew - the web is a wonderful thing. Early diagnosis saved his life, and the information on this site saved mine. I'm from: Brighton England Email: - lyndan@cwcom.net How I found the page: - Nurse in hospital My name is: Lynne Frickelton Comments about the web site: My husband is still in hospital after an accident on a snowmobile on 10.2.2000 whilst on a business conference in Toronto. His original injuries of broken pelvis, arm, ribs etc, were complicated after one week in a Toronto hospital by contracting N.F. He was not expected to live, but is still here (back in England now). He is presently undergoing alot of plastic surgery to his right trunk and has had to endure a series of setbacks along the way, including surgery to his bowel and bladder, but he is now making good (but painful) progress. This web site helped me in my hour of need in Toronto. I had flown out to be with him and ended up at his bedside for a month. A nurse at the hospital printed off the information from this website on the day he was diagnosed, and it reconfirmed what I already knew - the web is a wonderful thing. Early diagnosis saved his life, and the information on this site saved mine. I'm from: Brighton England Email: - lyndan@cwcom.net How I found the page: - Nurse in hospital My name is: steven L. Maya Comments about the web site: Former patient of NF I'm from: Denver, Colorado, USA Email: - How I found the page: - Article in Women's Day Magazine My name is: Ardyce Stone Comments about the web site: My two week old grand baby succumbed to this horrible infection 2/2/00. I'm from: Anaheim, Ca USA Email: - ardycestone@hotmail.com How I found the page: - researching for answers after Hailey's death My name is: Tina Estrada Comments about the web site: I found this site to be one of the most informative. it helped me understand what exactly happened to me when I came down with this infection. Thank you for taking the time to do such a great job. I'm from: USA Email: - brownpride1968@yahoo.com How I found the page: - surfing My name is: Martin Cahill Comments about the web site: April 26th national publication of the "Shoe" comic strip makes fun of Flesh Eating Disease... http://macnelly.com/shoefolder/shoe_archive.asp... for all those who have been affected, for all those who have died... this is not a funny matter... please contact the artist and voice your feelings....http://www.macnelly.com/emailjeff.html this is not a funny matter... and if taken lightly like this more people will die. signed..... the father of a teenager,who should be alive today to enjoy life, love and happiness. I'm from: Kingston. Ont. Canada Email: - mcahill@cgocable.net How I found the page: - My name is: Tracey and Rosemarie Schneider Comments about the web site: My 26 year-old brother (Rosemarie's son) suddenly became ill with nf about four weeks ago. 8 days in ICU and several surgeries later, he has returned to his home and is recovering. This website is incredibly informative and accurate. We wish to thank you for posting such an amazing resource on the internet. We found it to be extremely helpful and consoling. I'm from: Chicago, IL and Bridgewater, NJ respectively Email: - How I found the page: - searched the web for "flesh-eating bacteria" My name is: Ramona L. Miller at Ramona Eagle at aol.com Comments about the web site: I just recently had a friend -Gwendolyn Joyner of Lewisville, NC., died of Group A streptoccus So I'm glad that I have found your web site, So I can inform others about this terrible disease. Thanks again. Sincerely, Ramona L.Miller I'm from: Mocksville , N.C. - U.S.A Email: - Ramona Eagle at aol. com How I found the page: - librarian at mocksville/ davie co. gave me web site address My name is: Carol Shetler Comments about the web site: April 27, 2000 On April 13, 2000 we came very close to loosing our 24 year old son to necrotizing fasciites. Thanks to a fast diagnosis in the emergency room, David was in surgery within one hour of arrival. Doctors amputated both legs-right leg including His hip. David remains in the ICU at Southwest Washington Medical Center in Vancouver Washington as I write this note. He is breathing on his own but faces recovery from not only the amputations but from a stroke due to low blood pressure and high fevers that reached 107 degrees. He can not speak, move his arms, and we are not sure He can see-The stroke happened in the sight part of the brain. Our E-Mail Address is shetlerdss@aol.com. David has been on numerous news casts and has several trust accts going-(no insurance) I am sure letters or E-mail notes would be of great help when he starts to go through the rehab. part of his recovery. He is also facing more surgeries for skin grafting. David became a Father for the first time while he has been in the ICU. It has been very difficult for David's family but God has been and continues to be our help and comfort. Thank You, Carol Shetler Send notes to: David Shetler 21212 N.E. 15th Ave. Ridgefield, Washington 98642 I'm from: Ridgefield, Washington Email: - shetlerdss@aol.com How I found the page: - My name is: Dynelle Comments about the web site: This is a very interesting site. I am currently doing some research on NF in New Zealand, and have found your site to be very helpful. I'm from: New Zealand Email: - celebros@i4free.co.nz How I found the page: - searched for fasciitis My name is: Mark Ur Comments about the web site: My 76 year old mother, Rose Ur, was diagnosed NF on Saturday, April 29th. Sunday, April 30th she had sugery to remove the decayed tissue on her inner thigh and lower calf (right leg). Surgeon was confident that all was removed. I'm hopeful that it was caught at the right time and not too late. Thank you for your thoughts and well wishes for her recovery. I'm from: Long Beach, CA, USA Email: - markur124@aol.com How I found the page: - aol search My name is: Barbara Fileti Comments about the web site: I had flesheating bacteria 3 years ago. it started from a cut on my finger.It went up my arm and I had 4 surgeries. I wasnt supposed to make it and I did. I left the hospital after 3 weeks with my arm and hand and considered myself very lucky.I'm a guitar player in Nashville and my left hand is all scar tissue.I dip it in hot wax and try to work on it a lot but sometimes it gets really hard. But after reading some other stories tonite I feel lucky. And now I play steel guitar too cause by fingers are sort of frozen in the right position.I havent been in contactanyone else whos had it and I just discovered this website.My hand is getting lumps on it and I just read something about scar tissue and being easy to get other things and I'm again starting to freek. I guess I'll go back to the doctor but it's scary.If anyone wants to talk please email me. Barbara I'm from: Nashville, Tn Email: - elvis7@mindspring.com How I found the page: - did a search My name is: Kathy Shackelford Comments about the web site: I had two bouts with this disease and was hospitalized a total of 17 days. On a Thursday afternoon I left work going to the doctor because I had the flu (or so I thought)! I wass given medication for the flu and came home and went to bed on Friday I hardly got up except for bathroom trips because I felt so bad and my chills and fever were awful. On Saturday morning when I tried to get up I could not put my weight on my left leg and it was swollen and hot. I debated about what it was, went to my computer and did some checking but my only thought at this point was a blod clot. My husband was working out of town so I called my next door neighbor to see if she could help me get to the hospital. She did and I was the 8 days this time. The doctor really did not know what it was but finally diagnosed cellulitis. Around 3 weeks later it hit me again but in my right leg this time. Not quite as ugly as the first time but they did many tests trying to really find out what it was. I have since then found all these descriptions on the internet and know that my prolblem was NF. The reason the think it came back is that it probably wasn't healed the first time. So I stayed in the hospital 9 days that time. I have been going to a specialist in Memphis, TN for a few weeks no but no blood tests show this disease (if these is a blood test for it)! Thanks for letting get this out and I apprecciate you support group. I'm from: Grenada, Mississippi Email: - kshack@watervalley.net How I found the page: - thru an article in Womenss Day My name is: Whitejester Comments about the web site: Thanx for all the great info. I'm writing a report on NF for our biology class on bacteria. Keep it up!! I'm from: Edmonton, AB, Canada Email: - How I found the page: - Metacrawler My name is: Debbie Oberlohr Comments about the web site: My husband is recovering from this disease. He also was mis-diagnosed with the flu. This is a great site and after reading some of these enteries, I realize how truely blessed I am to have him with me today. I'm from: St. Louis Missouri Email: - doberlohr@gabrielcom.net How I found the page: - My name is: Monica Comments about the web site: I had to pick a disease to study in Science class. I chose flesh-eating bacteria because i had lack of knowledge about it. After lokking through your website I learned a whole deal. Thank you for helping because since this deisease has all of a sudden become popular many sites and books didn't have much information on it. I'm from: Canada Email: - How I found the page: - through ebscohost My name is: jim Comments about the web site: I'm from: Email: - How I found the page: - My name is: Ian Hahn Comments about the web site: This is a very informative page, thank you. Your page has assisted me on a a recent health class project. I'm from: Spokane, WA, USA Email: - How I found the page: - by searching metacrawler My name is: Marie-France Johnson Comments about the web site: Hi, I have received an e-mail from Belgium,via Canada that some shippments of bananas, coming from Costa Rica, had been infected with the Virus...is it possible, and how long is the Virus viable ? my e-mail is Miflenoir@aol.com... Thank you, Marie-France I'm from: Dayton,OHIO Email: - miflenoir@aol.com How I found the page: - Through the CDC... My name is: John Sparrow Comments about the web site: I had NF in 1999, had left chest wall removed , now recovered but have breathing difficulties due to prolonged period of ventilation. I'm from: Bristol, England Email: - john-sue@sparrow14.freeserve.co.uk How I found the page: - my son told me about it My name is: Jennifer Zimmerman Comments about the web site: I have just found out my grandpa in Kansas has this and I am looking up information on the net to help learn more about it. Sincerely, Jennifer Z. www.littleflurry.com I'm from: IL Email: - webmaster@littleflurry.com How I found the page: - hotbot My name is: Lyn M.. Contresceri Comments about the web site: I am a NF survivor. Had surgery Sept 1999. Incision was at the crevice of my leg where abdomen and thigh meet. Incision was 18" long by 12" wide by a depth to my thigh muscle (about 5"). EXTENSIVE debridement was done with a resulting deep and open wound. It went undiagnosed for about a week. Thank God I am a diabetic. The only reason I was in the hospital was for blood sugar control (it was 414). I began to get cellulitis (bacterial toxins at skin level like spiderwebs). Surgeon was called in; he recognized this for what it was. I was in surgery for about 3-1/2 hours. Strep B infection; very rare. After debridement was given antibiotics by IV. Wound was left to heal on its' own, from inside out. Three dressings daily preceded by a lavage of saline solution and vinegar; then dresings were gauze and over dressings of ABD. When wound reached a place where I could, I used Desitin ointment around area that had scarred to keep it dry, while continuing to use the lavage and dressings. It closed totally, in March. However, because of its' location, it occasionally reopens from stretching the wound tissue as I move my leg; I use topical antibotics on it, plus the continued lavage. I consider myself to be very, very lucky. I was in sepsis when the surgeon finally saw me; and the introduction of some of the ;'super' antibiotics kept me alive. Also, I was not one to ever get sick, so my use of antibiotics of any kind was nil. Original wound was a simple rash that the bacteria dropped through. Looked like an abcess. I'm from: Temple City, CA -- Email: - gdragon@pacbell.net How I found the page: - search engine using "necrotizing fasciitis" My name is: Kim Evans Comments about the web site: This is really a scary thing too think about. I did not realize that it has been around for so long. I hope we can keep this under control. I'm from: Faribualt Minnesota Email: - How I found the page: - On my internet explorer, under flesh eating bacteria My name is: Deb Landis Comments about the web site: Survivor of NF & NM Great place to come on the computer to read that others have survived this horrible ordeal and to silently pray for the families of others that did not get to it in time to be saved, my heart goes out to all of them as I know what my own family went through just during my illness, they supported me 100% and without it I would have gave up. Thanks again for caring about everyone. I'm from: Dugger, Indiana Email: - sdlandis@hotmail .com How I found the page: - from others My name is: Pat Holder Comments about the web site: I just went through this with my right index finger last December and found your article in Woman's Day magazine June of 2000 issue. It really made me feel lots better that I was not the only one to go through it. I was lucky to have my finger as mine went into blood poisoning and was in the hospital for four days in terrible pain. I was on morphine for two of those four days. I was really lucky that I did not lose my finger, arm or my life. I also did not have to have any skin grafts as they thought I might have to. The tip of my finger had turned black from the first knuckle and shrunk really bad, but I was still able to keep it without them having to remove it. It is still very very tender but I am able to use it more every day.If anyone would like to contact me I can be reached at tom@cornhusker.net.Thank you for having put the article in the magazine for people to be aware of what can happen and also for being on whe web. I'm from: Burwell, Nebraska, Email: - How I found the page: - My name is: Pat Holder Comments about the web site: I just went through this with my right index finger last December and found your article in Woman's Day magazine June of 2000 issue. It really made me feel lots better that I was not the only one to go through it. I was lucky to have my finger as mine went into blood poisoning and was in the hospital for four days in terrible pain. I was on morphine for two of those four days. I was really lucky that I did not lose my finger, arm or my life. I also did not have to have any skin grafts as they thought I might have to. The tip of my finger had turned black from the first knuckle and shrunk really bad, but I was still able to keep it without them having to remove it. It is still very very tender but I am able to use it more every day.If anyone would like to contact me I can be reached at tom@cornhusker.net.Thank you for having put the article in the magazine for people to be aware of what can happen and also for being on whe web. I'm from: Burwell, Nebraska, Garfield Email: - Tom@cornhusker.net How I found the page: - Article in Woman's Day magazine June 1 of 2000 My name is: Pat Holder Comments about the web site: I just went through this with my right index finger last December and found your article in Woman's Day magazine June of 2000 issue. It really made me feel lots better that I was not the only one to go through it. I was lucky to have my finger as mine went into blood poisoning and was in the hospital for four days in terrible pain. I was on morphine for two of those four days. I was really lucky that I did not lose my finger, arm or my life. I also did not have to have any skin grafts as they thought I might have to. The tip of my finger had turned black from the first knuckle and shrunk really bad, but I was still able to keep it without them having to remove it. It is still very very tender but I am able to use it more every day.If anyone would like to contact me I can be reached at tom@cornhusker.net.Thank you for having put the article in the magazine for people to be aware of what can happen and also for being on whe web. I'm from: Burwell, Nebraska, Garfield Email: - Tom@cornhusker.net How I found the page: - Article in Woman's Day magazine June 1 of 2000 My name is: barbara baines Comments about the web site: i would like to here from others with nf i have nf 1 wish i could join the chat group but would still like to recieve email from others I'm from: rocky mount,n.c. nash county Email: - cthjmema@webtv.net How I found the page: - just looking info on nnff My name is: Sophie Comments about the web site: I first wrote in last autumn. I suffered an NF infection following the birth of my daughter by C Section in July 1997. Although physically more or less recovered and back at work since September 1998, emotionally and pschologically, the repercussions are horrendous. I have managed so far without official stress counselling of any sort, thanks to the support of friends and family, but I am now forced to seek it. Our stress levels have been enormous and not just because of illness. My husband's business is going through a very difficult time and we have recently moved into a wreck of a house that needed a lot of work. Somehow I have to keep it all hanging together as my family and the mortgage depend on my cashflow. But the worst of all has happened. My husband has been having an affair for some months. The sense of betrayal and utter pointlessness of all my efforts to recover are so intense. Most of the time I can keep going and have a sense of humour. The main glue in my life are my work, my children, good friends and my family. But sometimes the despair is overwhelming - so much so that I feel like a crazy person. Along with the stress counselling we are also starting marital counselling. But it is another long hard road ahead and who knows where it will lead. But I WILL make it. I know I will. It does help to come back to these pages at the end of a day and reflect. Do you also provide punch bags and gum shields to stop me grinding my teeth at night? Just kidding. Keep up the good work. I'm from: London, England Email: - How I found the page: - My name is: susan mattero Comments about the web site: i currently am living thru this most angry vicious disease with my husband now laying in the hospital the lower left thigh gone and the upper torso area gone from this most devistating disease. he is currently under dr. tom santoro's care the one specialist and authority on this known bacteria in pennsylvania. he is still in the icu unit and there is no word wether the dr. has been able to remove enough skin and tissue to put a stop to the spread. my husband sustained a bruise from unloading furniture while at work and from that bruise he came incontact with the string of strep a and following flu like symptoms he was than diagnosed with this. I'm from: philadelphia, pennsylvania - usa Email: - dukeyoyo@yahoo.com How I found the page: - thru yahoo search My name is: Donna Dion Comments about the web site: Hello, My sister just lost her life to this horrible disease and finding your website is a God send. The medical community is still in disarray about this disease. I mentioned I felt like I was in a science ficton movie and they agreed with me. My siter was admitted to the emergency room at 9:00 am and died the following morning at 12:45am. I do have a questions does the affected person have to come in contact with a person infected with the strep A virus? Being in the form of Strep Throat or Impetigo? My sisters daughter had Strep throat. I will be real honest I fear this disease like no other. In the back of my mind it lingers and I pray no one else in my family contracts this horrible, horrible disease. I realize there are no know records that any family members have contracted this but like everything else there is always a first time. I couldn't bear to watch another family member go through that again!! I'm from: Ashburnham, MA 01430 Email: - dion18@gis.net How I found the page: - surfing the net through ask jeeves My name is: Barbara Fileti Comments about the web site: Hi again!Last time I wrote I didnt thank everyone who has contributed to this website and I didnt mention my doctor,John Bruno, who saved my life and arm, and my infectious disease specialist,Paul McNabb who also saved my life .I feel lucky every day that I'm alive.I just ran into a problem that maybe someone out there could give me some advice about.I applied for new health insurance and I was told that I would probably be rejected because of the bacteria and the surgeries.I guess I just figured that I would be thought of as healthy because I survived but because of the fear and unknown facts about this disease, I discovered I would be rejected as an insurance risk, and if I did get covered there would probably be a clause stating that my arm and hand wouldnt be covered.At some point I might need more therapy so that is definitely not cool,but now I'm afraid i won't get any coverage at all. I did have insurance when this happened, it didnt cover it all, since there was a 9600 out of pocket fee, but without the insurance I might not have had the great doctors that I had and I might not be here. So if anyone out there knows of any insurance which will cover someone who has survived this please let me know.Also if there is any legal recourse if I am rejected.Id like to know if anyone else is experiencing this. Thanks Barbara I'm from: Nashville, Tn Email: - elvis7@mindspring.com How I found the page: - friends told me My name is: Jeff Temple Comments about the web site: I am a graduate student forcusing on writing an article concerning necrotizing fascitis. This is a great web page site. Thank you I'm from: Bismarck, ND Email: - jbjat@btigate.com How I found the page: - through an article doing research My name is: Fay Comments about the web site: My husband is a survivor of NF.. He almost didn't make it because of our family dr's mistake.. he was in ICU for 24 days... he lost fingers and all toes due to this his started in his chest from a bruise.. he lost flesh from his nipple to his spine and from his arm between his elbow and shoulder to below his ribs.. i have learned alot from asking questions and reading up on this killer.. feel free to e-mail for any questions that i might help answer I'm from: west virginia Email: - jennyt_40@citynet.net How I found the page: - surfing the net to find out what i could because seemed like noone knew anything aobut this My name is: Eileen Ehret Comments about the web site: Literally the day after I had a joint replacement surgery in my middle finger of my left hand, I was in the emergency room at St. Vincent Hospital in Indianapolis. I was sent home with pain killers and the hand specialist on call did not take off my bandages from the initial surgery. He wrote in the medical report that "she wreaked of vomit". He did not send me home on an antibiotic. The next day, back in the emergency room, after becoming septic and receiving my last rites (I am Catholic) another hand surgeon diagnosed NF. Five surgeries later, I am alive and still have my left arm. I did lose my middle finger. I am finding that legal representation is very difficult to fine because NF scares attorneys. Do you have any suggestions? Thank you for your wonderful website. Eileen Ehret I'm from: Indianapolis, Indiana Email: - How I found the page: - My name is: Eileen Ehret Comments about the web site: Literally the day after I had a joint replacement surgery in my middle finger of my left hand, I was in the emergency room at St. Vincent Hospital in Indianapolis. I was sent home with pain killers and the hand specialist on call did not take off my bandages from the initial surgery. He wrote in the medical report that "she wreaked of vomit". He did not send me home on an antibiotic. The next day, back in the emergency room, after becoming septic and receiving my last rites (I am Catholic) another hand surgeon diagnosed NF. Five surgeries later, I am alive and still have my left arm. I did lose my middle finger. I am finding that legal representation is very difficult to fine because NF scares attorneys. Do you have any suggestions? Thank you for your wonderful website. Eileen Ehret I'm from: Indianapolis, Indiana Email: - pepcrew@aol.com How I found the page: - surfing My name is: Freida Cortney Comments about the web site: My 6 year old son was diagnosed with NF aafter having a simple case of the chicken pox. We were transported from Dalton Georgia at Hamilton Medical Center to TC Thompson's Childrens Hospital in Chattanooga TN, just in the nick of time, once we arrived my son went into septic shock, the area that was affected on him was his upper back, towards the shoulders. He was taken to surgery immediatly,the following days were touch and go, three surgeries later and the 9 days on life support, we are home but only to endure painful dressing changes and more surgeries to come, for skin grafting. God has a reason for giving my son a second chance, and giving me a second chance to be a mother. I'm from: Chatsworth, Georgia Email: - scortney@alltel.net How I found the page: - researching this disease and other success stories My name is: George C Robinson Comments about the web site: You guys are doing a great job in the management of this page, please keep up the great work!!! I'm from: Plainfield CT Email: - grobinson07@snet.net How I found the page: - acually while working on a term paper, and after speaking w/jackie, I HAD to come back!!! My name is: Barbara Maris Comments about the web site: An unusual condition on my forehead led me to the web. What is the cause? Is it from a tick (we live in a wooded area and take ticks off almost every day). Is it some other invasive cause? I'm seeing my doctor for a routine check-up on Thursday but I was wondering whether to call her earlier? Just wanted information and description of symptoms. Thanks for providing this astounding resource. Good luck to anyone dealing with NF. I'm from: Elizabethtown, PA Email: - How I found the page: - Browing ("flesh-eating bacteria") My name is: Aaron Cleveland Comments about the web site: Hi, my name is Aaron Cleveland and I am a physician that is in the beginnings of doing a study on NF. I love your site and hope to include some the information you have in my study. I'm from: Ca. Email: - ajcleveland@hotmail.com How I found the page: - 37.com My name is: Terri Flament Comments about the web site: Hi I have nf and Im 38 Years old. I just had coronary bypass surgery and angoplasty on the arteries to my kidneys. One doctor said the arteries were blocked by the fibromas the other doctor said the firbromas don't block arteries. I just though people should know. I'm from: Waukegan Il. USA Email: - tflament@eartlink.net How I found the page: - by searching My name is: Diana Comments about the web site: I'm here to gather information to give to my mother when she wakes up from her sedation. I don't know if she knows what has been going on these last few days of her life, but I want to prepare her with all I can to help her heal and cope in the next few months. I'm so glad I found this site. I'm from: Ontario, Canada Email: - How I found the page: - browsing My name is: John Quigley Comments about the web site: I am an NF survivor. I am finally back to work on June 13th after my initial diagnosis and surgery on April 16th. Three surgeries and 10 days in the hospital saved my life but I am still healing. I'm from: Austin, Tx Email: - john.quigley@tivoli.com How I found the page: - Internet search My name is: BRENDA REYNOLDS Comments about the web site: THANKS FOR HAVING THIS INFORMATION AVAILABLE TO THOSE OF US WHO HAVE LOST SOMEONE TO. YOU JUST DON'T GET ALOT OF INFORMATION FROM THE HOSPITAL, WHILE YOU DEALING WITH THE ILLNESS AND DEATH OF YOUR LOVED ONE. I'm from: LAINGSBURG, MICHIGAN USA Email: - REYNOLDB@STATE.MI.US How I found the page: - My name is: Heather A. Hoepfinger Comments about the web site: This is all very scary, it is good to see such an informaiton web page. I'm from: Portland, OR, USA Email: - heatherx.a.hoepfinger@intel.com How I found the page: - search for "flesh eating bacteria" through LYCOS My name is: Kathleen "Kate" Hamilton Comments about the web site: I LOST MY BEST FRIEND, MENTOR AND MOTHER TO THIS HORRIFYING LIFE TAKING DISEASE. SHE, WAS HERE HEALTHY FUN LOVING, HAPPY ONE DAY AND SO SICK TWO DAYS LATER. I NEVER HEARD HER DANCING LAUGH AGAIN. NOR DID I SEE HER BLUE EYES TWINKLE AGAIN. THAT SMILE, FULL OF THE LORD; THE SWEETNESS OF HER BREATH,THE MUSIC SHE MADE EVERY- TIME SHE OPENED HER MOUTH.SHE IS SO MISSED BY ALL WHO LOVED HER, AND THE ONES WHO NEVER DID KNOW HER, THEY MISS HER TOO. THIRTY DAYS AFTER HER HOSITALIZATION,THE LORD CALLED HER HOME. WE MISS HER NOW, BUT I WILL DO EVERYTHING IN MY POWER TO SEE HER AGAIN IN THE HEAVENS. I'm from: AMARILLO TEXAS Email: - kdhtoo@netzero.net How I found the page: - my brother My name is: Glorya Nevius Comments about the web site: My brother Danny is fighting NF, along with a host of other problems. He has lost his left leg, and will lose a finger, and several toes on the right foot. he has NF internally now, too. I wonder if anyone has ever survived an infection of NF this bad. I would love to hear from anyone who can offer us wisdom, words of support or hope. My email is GLO@AOL.COM. I'm from: The San Francsico Bay Area, California. Email: - glo429@aol.com How I found the page: - through ASKJEEVES.COM My name is: kevin westwood Comments about the web site: Thank you for setting up this site it is very helpful and informative, especially for me as an nf survivor. i am espcially interested in getting in touch with sophie from Lonon who has not left an e mail address. if anyone can help please contact me. I'm from: united kingdom Email: - kwestwood1@excite.com How I found the page: - information proviedd by a friend My name is: Marsha Shimizu Comments about the web site: My brother's daughter Alicia Shimizu, age 5 has come down with this bacteria and will be leaving Oahu, Hi on Wednesday, June 28th to Sacramento, CA with the help of Shriner's (they will be flying out from Florida to take her there) and has so far had a total of 8 operations. She fell in front of her house next to the sidewalk and was taken to the hospital where she received five stitches and sent home. This happened on June 15th. She is still in critical condition at the moment. She is currently staying at Kapiolani Children's Hospital on Oahu. I'm from: Lawton, Oklahoma Email: - minishimi@juno.com How I found the page: - Typed in necrotizing and selected SEARCH My name is: jodie munn Comments about the web site: my uncle has suffered and survived nf and is interested in talking to any other nf survivors especially those in the uk. so if anyone reads this please contact him on kwestwood1@excite.com as he has had such a rare disease he is keen to meet and talk with others who have suffered nf so please contact him. i have helped him search for further info following initial info provided by a friend. this is agood website and has been a great help so can i say a huge thanks to those who set up this website I'm from: England Email: - 94-munn-j@sneyd.walsall.sch.uk How I found the page: - when my uncle asked for my help to search for it My name is: Mary Alice Peterson Davis Comments about the web site: Survived! I lived...but it altered my life forever..cost me my teaching job (the fear of my peers as it sounded like something made up)...even the Dr was unable to convince them I lost part of the use of my hand over what sounded like an episode of the x files to my school administration. Was even accused of being delusional..even though they could see the black felon tissue for months where my finger used to be...awful experience. Still afraid after 3 years... I'm from: Charlotte, NC USA Email: - Kindnword@aol.com How I found the page: - When I had this in 97 there wasn't much information. I still look up the flesh eatting bacteria once in awhile...when I can bare to. So glad to see there is an association now My name is: Mary Alice Peterson Davis Comments about the web site: Been exploring the site...once again thank you from a survivor. I too was misdianosed and filled out the form provided here about it. I have a question for you others fellow survivors.. Are we all still afraid? I hate to admit it...but I am afraid everytime I get a scrape or bump.... Thanks I'm from: Charlotte NC Email: - Kindnword@aol.com How I found the page: - I try to keep up with the new information on our disease. My name is: Sharla H. Comments about the web site: I was diagnosed with NF in July of 1998 and was on sick leave from work and had a home health nurse assisting me until October of 1998. I was only 30 years old at the time and nearly died. I was shocked to find that out of the dozen or more doctors and specialists that attended me, I was the first case that any of them had ever treated. This is truly shocking because I live in such a large,well populated area. I would like to hear if anyone else experienced the same "inexperience" as I did when dealing with this disease. My doctors were wonderful and saved my life, but sometimes I felt like a guinea pig. I'm from: Hurst, Texas, USA Email: - Holland6@airmail.net How I found the page: - YaHoo! My name is: Yvonne Dixon Comments about the web site: Thank-you for making this info available. My good friend of university days, Erica, died last week. She and her mum thought she had the flu. When finally she got to a drs surgery, she was rushed to hospital, but died on the operating table during debridement surgery. I'm trying to make sense of how my always healthy friend could die in 4 days of NF. I'm from: New Zealand Email: - bydixon@ihug.co.nz How I found the page: - infoseek search. My name is: Pattie Barrs Comments about the web site: I contacted N.F. in march of 99.I survived after 14 surgeries and about 10 days in a hyperbaric chambers.I went to an emergency room at a small hospital at first and was told there was nothing wrong with me and sent home with motrin.Even though my X-ray was positive for N.F. This disease is easily diagnosed thru X-ray.The radiologist correctly diagnosed this 24hrs later and failed to notify me.If not f I'm from: tampa florida 813-973-3716 Email: - please contact me How I found the page: - My name is: Diana Jo (Case) Buffenbarger Comments about the web site: We need find a cure or the cause of this serious disease. It can take a person's life in a matter of days. It took my Mom's in ten days. I'm from: Springfield, Ohio Email: - buff2156@iapdatacom.net How I found the page: - I was looking up info about the disease that took my mother My name is: Leslie Carr Comments about the web site: I had Necrotizing Faciitis in my lower leg resulting from a dog bite. I survived 5 surgeries and was off work for 3 months. I am a Registered Nurse and I am a certified Wound Care Nurse. How weird is that? I'm from: Huntington Beach, California USA Email: - Momto4legs@aol.com How I found the page: - Looking for info on the net My name is: Leslie Carr Comments about the web site: I had Necrotizing Faciitis in my lower leg resulting from a dog bite. I survived 5 surgeries and was off work for 3 months. I am a Registered Nurse and I am a certified Wound Care Nurse. How weird is that? I'm from: Huntington Beach, California USA Email: - Momto4legs@aol.com How I found the page: - Looking for info on the net My name is: Leslie Carr Comments about the web site: I had Necrotizing Faciitis in my lower leg resulting from a dog bite. I survived 5 surgeries and was off work for 3 months. I am a Registered Nurse and I am a certified Wound Care Nurse. How weird is that? I'm from: Huntington Beach, California USA Email: - Momto4legs@aol.com How I found the page: - Looking for info on the net My name is: Judith M. Johnson Comments about the web site: I am a survivor, or as I prefer to say, victor. The violent flu symptoms appeared about two weeks after I had radio Iodine treatment for a thyroid disorder in June, 1996. I had no idea that the treatment would be such an assault on my immune system! In spite of repeated misdiagnoses by several doctors, I survived without losing my legs, as was feared. I have an assortment of pretty dramatic scars, but they no longer give me much trouble. Now (July, 2000), I have to admit that every day of my life is still colored by my NF experience. Mostly, however, I just feel tremendous gratitude for every day! Thank you for this web site. It is reassuring to know that I am not weird or alone. By the way, one of my students this past year was also an NF survivor. This disease doesn't seem to me to be as rare as some people would like to believe. I'm from: Minneapolis, MN USA Email: - jmjohnso@ties.k12.mn.us How I found the page: - web browsing My name is: Linda Dysert Comments about the web site: June 2000 I spent 3 weeks in hospital with NF in lower left leg. Three surgeries required. I thankfully still have my leg and expect to recover full use. I'm from: Akron, Ohio, USA Email: - LD263@aol.com How I found the page: - Yahoo Search My name is: Mary Frances Shinkle Comments about the web site: I currently live in Kentucky but have been in Arizona for a month (6/5/00-7/7/00) so I could be with my family. My father, Leonard H. Dickey, contracted nf. He had surgery on 6/4/00 and had to have his right leg amputated. We were told he had to have the leg removed or die that night. I am trying to learn more about this horrible bacteria and wanted to inform this foundation of yet another case. His wound is still open, but he was flown to San Diego's VA Medical Center today (7/12/00). We are hoping for prothesis but the leg was taken very high (approx. 6 inches from the hip). I will be happy to discuss this with anyone from your foundation. My email is mshinkle@boonecountyky.org. I'm from: Casa Grande, Arizona Email: - mshinkle@boonecountyky.org How I found the page: - Ladies Home Journal article |
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