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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: Vishal.R Comments about the web site: Condolences are sent out to all the patients that are suffering or suffered from the disease.I hope that there are research going on to get a cure for this disease. All the best to the patients in the world who are suffering from this diesease and I hope you live a normal life as everyone wants to. Goodbye and Goodluck from Vishal I'm from: Georgetown, Guyana Email: - vishalram@yahoo.com How I found the page: - I was doing a research on Flesh Eating Diseases and I came across this page My name is: sharon blumberg Comments about the web site: it has been awhile since i visited this web site, my dad died from this disease almost 5 yrs ago this month.i cannot believe how many more families have been affected by this dreaded disease.keep up the good work. I'm from: somers point n,j, Email: - sunmom1@aol.com How I found the page: - My name is: Gil Comments about the web site: I am a survivor of necrotizing fasciitis due to a clostridial bacteria infection following surgery to remove my spleen. They were removing my spleen because I had a blood disease called hemolytic anemia which did not respond to therapy. Two days after my spleen was removed I was rushed to the operating room because of high fever and low blood pressure and pain where the found the bacteria spreading. I have five massive wounds on my left side from my groin to my armpit. I have had 2 surgeries to debride the area and was in the hospital for 35 days and it is now 7 months since this happened and the wounds are still not completely healed. Keep up the good work with the web site. It is very informative. I'm from: Medford, MA USA Email: - gdellisola@earthlink.net How I found the page: - Lycos Search Engine My name is: Margaret Riggi Comments about the web site: This disease sounds more like science fiction until you know someone who gets it. My sister-in-law, Joanne Riggi of San Diego is at this time in the hospital fighting for her life. She has had four operations in the last four days. We are praying for her. Your site has given me more information then I have found anywhere else. Thank you. I'm from: East Northport, New York Email: - MKRIGGI@aol.com How I found the page: - under keyword "flesh eating disease" My name is: Jeanette Harris Comments about the web site: I work in a microbiology lab and was researching this disease so I can identify it when I see it in cultures. So far, in our small hospital, we have not seen it. Your site is very informative. Thanks and good luck to those that have it and their family and friends. I'm from: Enumclaw, Wash. USA Email: - baseball@tx3.com How I found the page: - search engine My name is: Pamela Comments about the web site: I'm a high school science teacher that wishes to go back to graduate school this year. I would like to research this bacteria and learn more about it. I really would like to research the most effective and quickest way to treat this powerful bacteria. I think it is amazing how these microscopic life forms cause macro problems! I'm from: Tampa, FL USA Email: - pamshazaam@aol.com How I found the page: - search My name is: Leesa Winter Comments about the web site: Dec. 23, 1999, I was rushed to the ER with, unknowingly at the time, NF. I had one third of my groin area removed and spent 6 days in the acute care ward. Today is my 33rd birthday and am happy to say I am here to enjoy it!! The docters told me if I had waited even a couple more hours....Well, needless to say I am here. I'm from: San Diego Email: - How I found the page: - just by doing my "homework"!! My name is: Barbara Cox Comments about the web site: My mother died of this disease and I wanted to find out exactly what it was. When she died the doctor told me that it was something soldiers got when wounded in battle. She was in a nursing home in Miami, receiving intravenous feedings and I believe the bacteria was introduced by the aide while washing her. By the time, she was taken to the hospital, it was too late to save her. I'm from: Austin, Texas Email: - How I found the page: - I searched by typing in the name of the disease and chose this site. My name is: Helen Wozniak Comments about the web site: Beginning about November of 1992, I was diagnosed with the flesh-earing disease and spent two months in ICU and then three months having therapy. So, a total of 5 months almost to the day. As I was 70 years old at the time, it truly was a miracle to survive. Should I try and compose a more detailed account? I'm from: Albany, New York Email: - MOMWOZ@aol.com How I found the page: - An article in the February 2000 issue of Ladies Home Journal. My name is: Terry Vissia Comments about the web site: My mother-in-law, was diagnosed with NF on Friday, January 7th, 2000. She was extremely lucky that it was diagnosed early and by Sunday, January 9,2000 she was looking much better and they were considering moving her from Intensive Care. She lost some flesh on her left leg, but seems to be over the worst of things and is on the mend. She is 76 years old and showing amazing strength. I'm from: Vancouver Island, British Columbia, Canada Email: - ineo_ter@uniserve.com How I found the page: - I went to Ask.com and choose this page out of the list of answers. My name is: Kathryn Friend Comments about the web site: My father George Mitchell died 9-31-99 of this terrible necrotizing fasciitis It was so sad he never found out why his leg hurt he was already under the tubes and out of it . I think this is a terrible thing to happen to anyone ,he was only 58 he lived with me and his three grandkids we miss him I cry ever day kathy I'm from: Walkersville MD Email: - kfr411@aol.com How I found the page: - friend My name is: Else Lien, R.N., P.H.N., M.S.N. Comments about the web site: Currently working on a Life Care Plan for a patient who had NF involving his right lower extremity. Surgeons saved the leg. Now trying to establish his life long needs. I'm from: Glendale, California Email: - ELSECNS@AOL.COM How I found the page: - SEARCHING My name is: kerri Comments about the web site: I have my best friends mom going through nnff, and we are still hoping they have gotten all of the infection out, but i must say, this web site rally helped in realizing there are survivors with this virus. I printed the question and answer section wich I know will help family members and friends understand what "MOM" is going through, once again THANK YOU!! I'm from: Massachusetts. USA Email: - jlena@capecod.net How I found the page: - yahoo, then medical then typing in flesh eating My name is: gina f. stierley Comments about the web site: I ALMOST LOST MY LIFE TO THIS DREADED DISEASE. THE AFTER EFFECTS OF MY SURGERY INCLUDE; SHINGLES, 2 HEART ATTACKS, 8 VISITS TO THE HOSPITAL FOR INFECTIONS, PTSS(POST TRAUMATIC STRESS SYNDROME) CELLULITS INFECTIONS AND ETC. I'm from: SAN CLEMENTE,CALIF. ORANGE COUNTY Email: - How I found the page: - My name is: GINA STIERLEY Comments about the web site: I ALMOST LOST MY LIFE TO THIS DISEASE IN AUGUST OF 1995. ONLY SURVIVORS KNOW THE DEPTH OF PAIN I AND THEY WENT THROUGH. SINCE I LIVE AT THE BEACH, MY DR TOLD ME NO MORE SAND, OCEAN OR GARDENING FOR FEAR OF INFECTIONS.NNFF ALMOST KILLED ME BUT I SURVIVED!!!!!! I'm from: PO BOX 2913 CAPISTRANO BEACH, CALIF 92624 Email: - NONE How I found the page: - SURFING THE NET My name is: Larry Moots Comments about the web site: I'm from: Kingman, KS 67068-8124 USA Email: - lgmoots@hotmail.com How I found the page: - It was sented by E-MAIL to me. My name is: Michael Weir Comments about the web site: I have read only a few of the stories on the webpages and my heart cries out for those who have lost loved ones and my prayers go out to those that have survived. Currently, my wife is fighting NF , having discovered she has it as of January 9th,2000. Fortunately for her, she is sediated and currently undergoing daily debredment sessions and hyperbolic sessions to help fight this terrible disease. As of this writting, her doctors are optimistic they have arrested the progress of the NF and I hope I can write a happy ending to what I know now is going to be a long uphill battle. I'm from: Alexandria,Virginia Email: - MWeir3@aol.com How I found the page: - looking for information about "flesh eating disease" My name is: Frederick Eby Comments about the web site: My sister contracted this disease just a month ago and am just wondering what to expect. I'm from: Kennewick, Wa. Email: - 2freddy@gte.net How I found the page: - Web search My name is: Rebecca Ratz Comments about the web site: I am 18 years old, and I contracted NF at 16 after some very difficult and extensive surgery. Few doctors at my hospital knew what the infection was, so I was never properly educated about NF. A large patch of skin was removed from my abdomen, and I had to have a skin graft. I consider myself very lucky because I have heard so many stories of people who did not survive. This site is very informative and helpful. Thank you I'm from: Atlanta, Georgia Email: - SharkRatz@aol.com How I found the page: - The February issue of Ladies' Home Journal My name is: kathy friend Comments about the web site: My loving dad died on 9-31-99 he was 58, rest in peace dad we love u and miss u terrible , your daughter kathy ,grandkids,Jon,krystle,mutt,dusty I'm from: walkersville MD Email: - kfr411@aol.com How I found the page: - searching My name is: Pam Comments about the web site: Until I had it myself, it was only something others got.I had not heard any stories about survivors.It has affected my right hand and of course I'm right handed. The worst is over but I still have at least one more operation on my hand. The doctors told me if I had waited even one more hour I would have lost my hand and probably part of my arm as I had 4 red lines all the way up to my shoulders. I try to maintain a positive attitude, especially for the sake of my 2 children. I take one day at a time. My next surgery is scheduled for March, 2000. Then the healing process begins again. I'm from: East Boston, Massachusetts Email: - knitsall@aol.com How I found the page: - article in Ladies Home Journal Feb. 2000 issue My name is: Kim Orton Comments about the web site: I had a similar experience. I had multiple soft tissue abcesses on my foot, leg, and arm. I spent a month in the hospital and had 4 debriding surgeries and 1 for skin grafting. My infection was caused by strep B but was unresponsive to antibiotics. Like others, this was hard to diagnose. It took about 2 weeks. I'm from: Bentonville, AR Email: - OTKD@AOL.com How I found the page: - Ladie's Home Journal article My name is: kathy friend Comments about the web site: I made a mistake my father died on 10-31-99 I had wrote that he had died on 9-31-99 that was wrong I am crying about this as I write we miss you dad, kathy~ I'm from: Walkersville MD Email: - Kfr411@aol.com How I found the page: - friend My name is: Tina Harbin Comments about the web site: My boyfriend just came out of surgery where the doctors removed skin from 3" above his ankle all the way up to his groin area. He became ill exactly one week ago and the doctors misdiagnosed him with having the flu. He was hospitalized 5 days after the onset of the illness and was flown to Denver (from Grand Junction, 250 miles away) for more specialized treatment. Within 30 minutes after his arrival, he was taken to surgery and diagnosed with the "flesh eating disease". We don't know what the pronogsis is at this point, but I am educating myself about this awful, awful disease. I'm from: Grand Junction, Colorado, USA Email: - tina@gj.net How I found the page: - as a link from another page My name is: Bruce G Sengbusch Comments about the web site: My brother IS fighting NNFF Decenber 19, 1999 3/4 of his torso is affected. He is getting better every day. They hope to have the skin graph done in 3 to 4 more weeks. With Gods Help he will beat this. He is at Miller Dwan Hospital In Duluth MN. I'm from: Green Bay WI - USA Email: - Bgseng@aol.com How I found the page: - Looking for information My name is: Julianna Delesha Comments about the web site: In july 1999 i was diagnosed with NF, i got it in both hands, i lost my ring finger on my right hand and my ring and pinky fingers and full skin graft on my left hand. i am very lucky to be alive. I will be having surgery again on february 4 2000 on my right hand. they will cut the tendons in my fingers to straighten them out. and possible surgery on my left hand some time in the future. I'm from: Waterville,MN Email: - jdelesha@yahoo.com How I found the page: - relative My name is: Kerry R. Glavich Comments about the web site: I am a 46 year old male. Six months ago, today, I was diagnosed with NF and flown via air ambulance to the University of California at Davis Medical Center in Sacramento, California. I had been in the ICU in my hometown for 24 hours before the correct diagnosis was made. Within 40 minutes of arrival at the UC Medical Center, I was in the first of four surgeries. The last thing the surgeon told my wife was, "your husband's NF is pretty far along. I don't know if he will survive this." During the 5 days that I was sedated, I had three debridement surgeries. I had a large area of skin and fat tissue removed down to the muscle from just above my groin area, up my left side, under my left arm, and around my back. My back and left flank served as my "donor site" for my skin grafts. By the Grace of God, and some astute physicians, most notably Dr. George Husband, Dr. Kay Stokes and Dr. John T. Anderson, I am still alive. The entire staff at UC Medical Center was (and still is) wonderful. We just came back from a checkup, and everything is progressing well. I can consider re-constructive after at least a year has passed, but don't know what I'll decide. I'm from: Eureka, California Email: - kerry@wcinet.net or kglavich@aol.com How I found the page: - I visit it frequently! My name is: Michelle Smith Comments about the web site: My partner Graham had his leg amputated in August 1999 to save his live from this awful infection. He got his prosthesis the Monday before Christmas and has made amazing progress. He has been told that he looks likes someone with a lower limb amputation rather than a full leg amputee. His determination and will really does humble me, nothing in life is too much for him to face. I'm from: Hampshire, UK Email: - michelle@gosport5.freeserve.co.uk How I found the page: - search engine My name is: Mona Comments about the web site: Hi,my sister had N.F. She was hospitalized in June. She was in the I.C.U. for three weeks. She was in the hospital for a total of 4 months. It was devastating to me and my family. We were told for about 2 months that they weren't sure she was going to make it. We could hardly sleep or eat, it was like a nightmare. She is alive, but has holes down to the bone in her leg and pelvis. If you want to e-mail me, feel free. I'm from: New York City, New York, U.S. Email: - AliMo @ dellnet . com How I found the page: - I was looking for any info on N.F. since it is a little known disease My name is: Heidi Yielding Comments about the web site: In June of 1996,I survived a bout with NF. Just after my 21st birthday,I fell and scaped my thigh. The wound was very soar,and caused a huge blood clot under the skin.Although I took good care of my injury,(atleast I thought I did.)The doctors later told me,that the infection entered the wound most likely within the first twelve. Seven days later I was so sick with infection that I couldn't even walk.By the time I got to the doctor my fever was over 103, and my blood pressure was very low. My doctor took one look at the wound, and I got rushed to the emergency room. When I arrived(witin 5 min. away)my doctor had allready called them,and was trying to find a surgeon to preform emergency sugery. I thought "sugery on what?" When my surgeon came into see me,he drew a line around the outside of the infection,with a ball point pen.He said if the redness went outside the mark,i'd have to have surgery. Within a couple hours I was in sugery,very confused,and definatly not realizing what my leg was in for. When they took the bandage off of my leg I went into histericle shock! That's when the sugeon and my family broke the news to me.I'd been very close to losing my whole leg,or to death,so basically,consider my self lucky! The outcome of my leg was a 2-3 in. whole,and 2inches wide. I was in the hospital for 8 days. The whole was left open for six weeks, and I had to serile pack it three times a day. I was still at high risk to infection, and was advised to stay indoors as much as possible,until the skin inside could grow back up to the level of the outer skin. Today I look at my family my husband(who was my boyfriend at the time of trauma)have made ,two beautiful little girls,and thank God for giving me a second chance at life,and when I look at the three inch long,a half in. wide,with noticable muscle and tissue loss underneath on my leg,I'm just thankful I have a leg at all. I'm from: Placerville,California Email: - ljbk@inform.net How I found the page: - Ladies Home Journal My name is: Jo Comments about the web site: I am studying to be an Occupational Therapist at the University of Derby, England. I am in my first year and am preparing for a presentation on the deterioration of wounds. I'm from: Derbyshire Email: - How I found the page: - google search My name is: Vicki Comments about the web site: Thanks for all the information... my mother died from this terrible disease in Sept.99. After 15 days in the ICU- a leg amputation, and a second surgery to debride the leg even more, finally all the other organs began reacting to the toxins being released into her system. We didn't know much about this then, but have come to learn that it is much more prevalent than anyone would imagine. It is a horror that has changed our entire family. I'm from: Palatine, Illinois Email: - Vikstur@aol How I found the page: - from and article in the Feb2000 Ladies HOme journal My name is: Christina Bowman Comments about the web site: I had never heard of this disease until 17th January 2000, now my family has been devastated as my father (age 63) has died from it. Your pages have at last given me some understanding of how a fit, healthy man could die within 3 days of a "sore leg" (no outside trauma present). I'm from: Canterbury, Kent, UK Email: - cbowman@brunswickgroup.com How I found the page: - link from medscape My name is: Jules Comments about the web site: This site is wonderful. I'm so happy to find out that my dad wasn't the only person to have this bacteria. this page really means a lot to me. Thank you for all of the effort that you have put into this web site. I'm from: Corsica, SD USA Email: - jam39@hotmail.com How I found the page: - my sister told me about it My name is: MIKE BOLER OMAHA NEBRASKA Comments about the web site: Two years ago today,February 1st 1997, I took my wife back to the hospital emergency room for the third time that weekend. Two and a half months later, after battling ARDS, five operations, (one month comatose) and weeks of rehab she came home on her Birthday, April 9th. She was one of the lucky ones. Today, she is moving on with her life and career. We're very fortunate the Doctors and Nurses at Methodist Hospital were so good and she survived this ordeal. I'm from: Omaha Nebraska USA Email: - How I found the page: - Magazine article My name is: connie grant Comments about the web site: I'm from: Email: - How I found the page: - My name is: Brandi Watkins Comments about the web site: Thank you so much for this website. I have had a very dear family memeber die from nnf. your page helped me understand what nnf is. thank you so much. I'm from: Valdosta, Georgia Email: - brandiwatkins@hotmail.com How I found the page: - searched for nnf information My name is: gary w hopkins Comments about the web site: i had nf on the adomen i was out on my back for four months this the wherst thing i ever whent thour,the doc took out a 18''x 12'' chunk out of me good thing im fat or nf would have won!! the battel good luck to all and stay safe I'm from: chepachet ri Email: - mrmister@tp.net How I found the page: - news paper My name is: Eldon B. Swanson Comments about the web site: I was misdiagnosed in May at a small local hospital and subsequently was takeen to the University of Iowa Hospitals and Clinics by my wife. Where I was taken immediately into emergency surgery for tissue removal and within 48 hours I was back in surgery. I remained in the hospital intensive care and trauma unit for almost one month and am still recuperating after nearly eight months. I would truly hope no one would have to go through tis. God bless other survivors. I'm from: Hudson, Iowa 50643-0524(USA) Email: - eswanson@hawkeye.cc.ia.us How I found the page: - A friend My name is: Garnet Watson Comments about the web site: I am a survivor of Necrotizing Fasciitis. I tired to e-mail Donna but had no luck. I'm from: Port Perry, Ontario, Canada Email: - watsiam@aol.com How I found the page: - surfing the web to find out more about this disease. My name is: Navin S. Dedhia Comments about the web site: Excellent source for public information. Keep up the good community and social work. Good luck -- Navin S. Dedhia I'm from: San Jose, California, U. S. A. Email: - Navindedhia@hotmail.com How I found the page: - A friend sent the URL button My name is: Comments about the web site: My daughter was sent the e-mail about the NF bananas from Costa Rica. She called me in to read it and I referred her to your Welcome page. Her father, my husband, died from NF in 1994. Thank you for your most informative website. My daughter referred the person who sent her the e-mail to your site and she asked her to forward it to all the people she sent the e-mail to. Thanks again, please keep up the great work! I'm from: New York Email: - How I found the page: - My name is: Debbie D'Angelo Comments about the web site: I becam very ill with what I thought was the flu on May 23, 1999. The next day my leg started turning red and paniful. The next day I was in the emergency roo. They admitted me saying I had a skin infection and would be there overnight. After 5 days of tests and my leg deteriated, they came to me and said it was NF and if they didn't amputate my leg, they didn't know if I would live another day. I was in surgery within an hour where they remove my leg below the knee. They kept the wound open for 3 days to drain the rest of the infection out, then back to surgery to remove to above the knee. I was in so much pain, they had me on super drugs and antibiotics. I am now in a wheelchair but I have my life. The depression is great somtimes, and I have to really struggle to remember that I'm gratful to be alive. I hope and pray that they come up with a treatment so nobod else has to go through what I did. Thanks for an informative page. I'm from: Covina, CA, USA Email: - Nanook4@aol.com How I found the page: - searched for it My name is: Sheri Hardin Comments about the web site: I just stopped to read some of the new entries. You girls are still doing a really great job. Sorry it's been awhile since I've been in but my dad had to have brain surgery(tumor-benign)so my mom and I have been pretty busy. So I've been reading over some of the new entries and I hope that I can help someone a little bit with this horrible disease. If anyone just wants to talk I'm here to listen. God bless you all. I'm from: Klamath Falls, OR Email: - jrch@cvc.net How I found the page: - NF Survivor My name is: Wendy Baxter Comments about the web site: My mother, Marguerite Shirley Welch, contracted strep A in her right forearm with no apparent cause. She was in Naples Florida when it was diagnosed on January 10/00. Thanks to the ICU Head Dr. Albert she was quickly diagnosed and operated on. She has lost most of the tissue on the top of her right forearm and is still undergoing debridement before skin grafting. She was air ambulanced home to Thunder Bay Ontario Canada two weeks ago. We are seeking more information, especially with respect to the psychological aspects following recovery. I'm from: Thunder Bay Ontario Canada Email: - sbaxter@tbaytel.net How I found the page: - through the internet My name is: Marla James Comments about the web site: Funny, I thought it was just the flu. I am a survivor! I was admitted to ER with flulike symptoms and a very swollen abdomin. by 12-16-99 they removed my entire lower abdominal region and half my labia. My doctors said i was very close to death. I am still healing would love to get in touch with others going thru the same thing I am 38 years old, I am a diabetic (any other diabetics out there?) I know there are many psychological ramifications to this, the wound? will it come back? and why me? I had no entry point so i still don't know how I got this, but i have a wonderful family and I am glad I am alive. I'm from: Huntington Beach, CA Email: - marlajames@mindspring.com How I found the page: - search engine (dog pile) My name is: Vincent Iacocca Comments about the web site: I recently was diagnosed with this disease, I went to the doctor three hours after experiencing severe pain and purplish discolorization. I lost half my left index finger, and consider myself very lucky. I'm from: Essex, Vermont , USA Email: - How I found the page: - searched the web My name is: Vincent Iacocca Comments about the web site: I'm new with computers. I'm trying to post my email address, and it's either on here now four times, or I guess it won't be here at all. If anyone is interested in talking about this disease, I'd love to hear from you. I recently lost half my left index finger, but I'm alive. I'm from: Essex, Vermont , USA Email: - vincenti@neci.edu How I found the page: - My name is: Eugene Fox Comments about the web site: I consider myself to be blessed by God to have been introduced to the glyconutrient complex (glucose, galactose, mannose, fucose, xylose, n-acetylglucosomine, n-acetylgalactosamine and n-acetylneuraminic acid), which I was taking in a substantial amount before contracting NF. Having learned of research at the University of California that showed well people enjoying an increase in immune system function of 50% through the glyconutrients, and ill people having an increase of as much as 400%, I was confident that through increased intake of the complex my immune system would take care of the NF, and it did. The only thing I have been left with is a bit of staining of my skin where blisters broke - and that is fading away. For this and other reasons, I passionately pursue the opportunity to share this knowledge God has given me. Do contact me, if you wish. I'm from: Canada Email: - euglofox@xcelco.on.ca How I found the page: - Searched through Yahoo! My name is: Brett West Comments about the web site: What your'e doing is great. I'm from: Stafford, Virginia Email: - brettjwest@Yahoo.com How I found the page: - research for science paper My name is: Victor Scott Comments about the web site: My wife recently lost her right arm to this "infection" I will be looking for more support and information after we get she comes home from the hospital.. I'm from: Meridian,Pa 16001 Email: - vscxott6598@aol.com How I found the page: - My name is: Ricky Barnes Comments about the web site: This is a terrible thing to have happen to anyone. My father contacted NF in December of 1998 and was in and out of the hospital during December and January of 1998 and 1999. He fell on his thigh in the first part of December 1998, and a large bruise appeared on his leg. The doctor's treated it, but nothing seemed to help. My mother took him the emergency room one weekend, and he was placed in the hospital. The doctor's ended up taking a large part out of his leg and had to do a few skin graphs, but NF still left a large deep pocket in his leg. It was very touch and go for awhile there, because this is something that we had never heard of around this area. This story has a happy ending, and he is doing fine now, but our hearts go out to those who's loved one's were not as lucky as my father was. If you wish to speak with another survior of this terrible disease, feel free to contact me at rab61459@yahoo.com. This is a very informative site, and I hope that is will inform others how bad NF really is. Thanks again I'm from: Lexington, KY, USA Email: - rab61459@yahoo.com How I found the page: - My father and his sister. My name is: patti rodgers Comments about the web site: i lost a very special friend to NF on december 30, 1999; his name was jay william kunzle and he was a truly beautiful man. this web site has been a great source of information and comfort to me, as well as to jay's family and his other friends. blessings to jackie and donna for doing such wonderful work here, and to anyone facing this horrible disease. I'm from: washington, dc, usa Email: - rodgersmp@aol.com How I found the page: - when jay was sick, one of his friend's brothers found it; we copied it dozens of times and read it to tatters My name is: chris cameron Comments about the web site: my mom just came home from the hospital after 10 weeks. she was in a coma for 6 weeks during which her liver kidneys pancreas bladder and lungs quit functioning.she will lose most of her fingers on her left hand and most of both feet.all her organs are working now but she goes back friday to start the amputation/debradement.i hope that reading youre survivor stories will help her.she is awfully depressed now and very worried about her mobility after all is done.my mom just had her appendix taken out and was on large doses of steroids,namely prednisone and the bad thing is she went to our family doctor and a specialist the two days prior to her hospitalization.the specialist even took blood samples.when she finally was hospitalized the day after the visit to her specialisther white blood cell count was zero.how could he not have picked up on that after the blood test?well remember us in youre prayers I'm from: hemingway,sc usa Email: - How I found the page: - topic search My name is: john dickinson Comments about the web site: Thanks for your insightful site. Comment: perhaps more medical infomation. A friend of mine, Dr. Paul Stepak, has written about this disease. Why am I here? This morning my daughter called from Amsterdam to tell me that her mother, my ex, had upper torso NF. So I was really looking for information relating to medical prognosis. Is upper torso more dangerous than lower extremities...etc. It is ironic, that I just experienced a below the knee abbreviation (that is the new name for the sometimes unutterable, amputation). Thanks again for your informative site. I will be back, to help, if I can. john dickinson jrd@i.am I'm from: seattle, wa Email: - jrd@i.am How I found the page: - yahoo search My name is: Elizabeth Plasick Comments about the web site: I never heard of this diseaseY I'm from: Kalamazoo, Michigan USA 49008-1937 Email: - eplasick@aol.com How I found the page: - ADVOCACY My name is: mark mc gary Comments about the web site: A wonderful reference. I am a graduate student who executed a post hospitalization (fatal) study on the microbiological flora of a household. case: Washington State dec.99 Paper: Post intake assay.domicile. contact point: 12 pages with references: mcgama88@hotmail.com I observe many conditions of an outbreak Wa. state and N. Idaho and have gone on record: as graduate student urging making this disease reportable. I welcome any communication on this subject, including research querys. Retain file regarding comment by surgeon on treatment. I'm from: walla walla, WA Email: - mcgama88@hotmail.com How I found the page: - Excite search. My name is: Chocolate Comments about the web site: I reviewed the pictures posted on the internet I was very pleased to see there is a site that educates people about this disease . Thank You Very Much I'm from: San Antonio, Texas U.S. Email: - morganskillz@aol.com How I found the page: - Brousingb the internet My name is: lisa Comments about the web site: My brother Jon died of NF in January 91. This due to mis-diagnosis (at the hospital, a doctor thought it was a Brown Recluse spider bite) and the fact the NF had spread quickly before anything could be done to save his life. I still feel guilty after these years due to lack of action on my part. I rushed him to the doctor where he asked where my brother got the 3rd degree burns. It was that bad. I then took him to a county hospital because he had no insurance. At the hospital, they didn't take a look at him for about 6 hours. And by the time they did, the infection had spread too far. Right now, I am trying to set up a page on my website dedicated to my brother Jon. Any help or feedback would be greatly appreciated. I'm from: texas Email: - kettlekids@hotmail.com How I found the page: - through LHJ My name is: Nanette Vanderford Comments about the web site: My mother Molly Williams has been at Harborview Medical Center in Seattle, WA for close to 3 months now. She became infected with NF through a small cut in her right cheek. I would like to talk to any other survivors who have had NF in the face and neck area. They had to remove all the skin, tissue, and muscle on most of the right side of her face. Because that side is down to bone they have had difficulty getting free flaps to work. They are now talking about tissue expansion of the forhead, and my mother is very apprehensive about the procedure. If you have any information regarding reconstructionof the facial area please contact me. To those people who lost their loved ones to NF my heart goes out to you, you are in my prayers. To survivors I thank God that you all made it, I am seeing first hand what it takes for that to even be a possiblity and your stories of survival have helped carry my family through this. I'm from: Graham, WA Email: - WaHomegrown@hotmail.com How I found the page: - Bo Salisbury My name is: Patricia AW Comments about the web site: Just looking for a little education that my HMO seems to be lacking in. I'm sitting here half scared out of my wits because nobody seems to take things seriously at that place. I'm sure it's nothing, but it's still good to know you're out there to help in any way. Thank you and I'll spread the word about your website. I'm from: Tucson, AZ USA Email: - How I found the page: - Doing a search on AOL My name is: Jackie Roemmele, cofounder NNFF Comments about the web site: Hello everyone -- I was contacted by Ms. Sarah Bampton of British ITV. She is developing an in-depth study of NF cases in the UK and is looking for people in the UK who might be interested in participating. Her email address is sbampton@meridiantv.com. Thanks to everyone -- our message is getting out! We'll let you know when our book is published later this year. Regards, Jackie I'm from: Niantic, CT Email: - jroemmele@aol.com How I found the page: - My name is: Paul Comments about the web site: I am a surfer, so I spend alot of time in the ocean, sometimes I get some pretty good cuts and scrapes, from surfing, usually I will just go clean the cut and let it stop bleeding then I hit the water again. What are my chances of getting fleash eating bacteria, is it common in the ocean. Or do I even have anything to worry about. Any info would help. Thanks I'm from: Texas gulf coast Email: - Nakakosho@aol.com How I found the page: - surfing the net!! My name is: Leesa Winter Comments about the web site: It's been 2 months since my NF experience and I feel great. I have moved to Orem, UT and am looking for someone to talk with. I'm from: Email: - Leesa4good@hotmail.com How I found the page: - My name is: Sheila Toppi Comments about the web site: I am a survivor of NF. I have e-mailed you and just filled out the survey. I'm from: Lowell, MA USA Email: - thetoppis@mediaone.net How I found the page: - searching for info on nf My name is: Sheila Toppi Comments about the web site: I am a survivor of NF. I have e-mailed you and just filled out the survey. I can't believe the number of people affected by this!! I am almost in tears reading this and re-living that horrible nightmare of Feb. 1996. I had 6 surgeries altogether, spent 20 days in the hospital, and 88 days of home care after that. I thank my husband, Joe, for giving me a reason to live. The pain was so bad, if it weren't for him asking me before my first debridement surgery to please come back to him, I honestly don't think I would be here today because I wanted to die just so it wouldn't hurt anymore. I am badly scarred and numb still today, but he loves me the way I am. I would love to chat with other survivors. I'm from: Lowell, MA USA Email: - thetoppis@mediaone.net How I found the page: - searching for info on nf My name is: Cheryl Smith Comments about the web site: I would like to thank you for all of your work on this bacteria. Our 17 year old son contracted this from a cat bite (our family cat) on his hand. We are all very blessed that he's still with us and had a great group of doctors caring for him. Like Donna, Brian also had five surgeries to stop this unbelievably fast growing bacteria. He also was unaware what had happened to him until he awoke a few days later in ICU and one of the five doctors he had finally told him what had happened. He has alot of questions that go unanswered only because he's unsure of what to ask. I'm hoping that your web site gives him some of the answers he's looking for. It certainly has been helpful to me. Thank you again for being here! Sincerely Cheryl Smith I'm from: Edgewood, Washington....U.S.A. Email: - redbob1@gte.net How I found the page: - Yahoo--necrotizing fasciitis--search My name is: Bruce D Courtney Jr. Comments about the web site: I am doing a report for school. Thank you, I have got a lot of infomation from this site. I'm from: Homosassa Springs Florida, USA Email: - diffy@hitter.net How I found the page: - My teacher at school, Lacanto Middle School,Lacanto Florida My name is: Daniel Morrow Comments about the web site: I feel like an idiot, I did receive an e-mail stating that the Necrotizing Fasciitis could have infected bananas from Costa Rica, as the bananas that I have access to are from Winn-Dixie and are from Costa Rica. I appreciate your Web page though, it really put me a little more at ease. Thank you for Bearing with me. I'm from: Cantonment, Florida, USA Email: - How I found the page: - AOL search My name is: Pattie Welsh Waschek Comments about the web site: My cousin has just been diagnosed. Everything is yet uncertain. Even more disheartening is that in conversation found out about yet another friend of a friend was diagnosed at the same time. Both live in the same community. In our prayers. Thank you for the information! I'm from: Lakewood, OH Email: - How I found the page: - info search/flesh eating/fact sheet My name is: Maurice Poissant Comments about the web site: I am a survior of NF. I lost my left arm to this infection in Feb.of 1999. I consider myself to be very lucky that I am alive. All of doctors and nurses at St.Francis Hospital in Hartford were the best that any person could ever ask for. If any of the co-founders would like to talk with them I will gladly give you their names. By the way I was left handed so this is being typed right handed using the old hunt and peck method. If you would like to discuss my case more in depth I can be reached by my E-Mail address. I'm from: Windsor Locks, Ct. 06096 Email: - BV-MO-POIS @MSN.COM How I found the page: - FROM MY DAUGHTER My name is: CLAUDIA G. TOMASSETTI Comments about the web site: I AM A DOCTOR. I AM ARGENTINA. I HAVE A PATIENT (child of 1 year old) with an edema and necrosis in 2 superior eyelid. I WANT KNOW IF THIS IS A FASCIITIS NECROTIZING. THANK YOU AND I AM SORRY FOR MY ENGLISH. I'm from: BUENOS AIRES, ARGENTINA Email: - NAPOLEON@cronosku.com.ar How I found the page: - search My name is: Steven A. Lopez Comments about the web site: Thanks for making know information about necrotizing fasciitis easily available. I recieved the NF banana e-mail and am concerned with the bias of the orginator of the e-mail and the Dr. arguing that it is not valid. That is the price of easily available information. One has to weigh both sides to determine today's excepted facts. What is fiction today can be fiction tomorrow or tomorrow's reality. THANKS STEVE I'm from: Arizona Email: - How I found the page: - Search Engine My name is: Billy Mesa Comments about the web site: Thank you for this web page. I will pass this information on to the family of my wife who lost a loved one , Lori Spina, to this terrible bacteria. I'm from: Scottsdale, AZ Email: - bmesa23@aol.com How I found the page: - Yahoo My name is: Jaci Comments about the web site: Thank you for this site. My little sister just died from NF and I had very little information to go on. My brother located this site and shared it with me. As far as I can find, it is the best, most extensive, and probably ONLY website dedicated to something that is simply bizarre. Her name was Mary Denise Wilcox Roller. Married five months, mother of four: a 20 yos, 8 yod, 4yos, and 2 yod. Born 5/15/59 and died 3/3/2000 of NF. She knew no strangers and had no enemies. I'm from: Oregon, she was in Nevada Email: - How I found the page: - My name is: Amber St. Pierre Comments about the web site: One of my close friends died on June 13, 1998. Matt was only 17 and had so much more to do before he left us. I think that this is an excellent web site and I pray that it will help to find a cause and cure for this terrible disease. I'm from: Kingston, Ontario Canada Email: - How I found the page: - Friend My name is: Mona Comments about the web site: My sister was struck with N.F. in June of 1999. I have never seen anyone that young near death. It was devastating for the whole family, to watch someone suffer that way. Unfortunately, the doctors did not want to be at all encouraging. Now my sister is doing pretty well and she is back at work, but I'm sure emotionally, it will take years, especially for her to feel well again. I have another entry in the guest book and through that I have been in touch with a very nice woman who has suffered with this disease. I must commend all of these brave people and try to offer this encouragement. Try to stay strong if you can and don't be afraid to ask for support. I don't know what it's like to have N.F., but feel free to e-mail me and I will try to help if I can. I'm from: New York City, N.Y. Email: - AliMo @ dellnet.com How I found the page: - From my sister My name is: PAM HARRISON Comments about the web site: My sister Julie is just recovering from NF and is very keen to make contact with relatives or survivors with a view to starting a help line and register here in the Uk. If anyone out there is interested please E.Mail me for a telephone number. I'm from: Hinckley. England. Email: - harpam45@netscapeonline.co.uk How I found the page: - Researching NF My name is: DR STEVE MACGREGOR Comments about the web site: My beautiful wife was infected by this horrible bacteria last year. It occurred following the birth of our fourth son. She developed multiple organ failure. She spent three weeks in the ICU on life support. Retained placenta may have contributed.Miracuosly she survived but unfortunately has permenant kidney failure. We are hopefull she will be able to get a transplant.Our prayers to all who have lost loved ones to this disease. I'm from: Ontario Canada Email: - smacgregor@canada.com How I found the page: - search My name is: DR STEVE MACGREGOR Comments about the web site: My beautiful wife was infected by this horrible bacteria last year. It occurred following the birth of our fourth son. She developed multiple organ failure. She spent three weeks in the ICU on life support. Retained placenta may have contributed.Miracuosly she survived but unfortunately has permenant kidney failure. We are hopefull she will be able to get a transplant.Our prayers to all who have lost loved ones to this disease. I'm from: Ontario Canada Email: - smacgregor@canada.com How I found the page: - search My name is: Steve Larson Comments about the web site: I found your website after receiving an E-mail warning about becoming infected by necrotizing fasciitis from consuming Costa Rican bananas. Thanks for the information refuting this E-mail. I'm from: Groveland, Illinois 61535 Email: - lfamily@mtco.com How I found the page: - Hyperlink from www.jps.net/bo55/necfas.html My name is: Brenda Ruhnke Comments about the web site: My husband, Dave, contracted NF last summer. We haven't had much suport because so few people have ever heard of it. We would be hapy to hear from other survivers. I'm from: Topeka, KS Email: - stayhomemom@hotmail.com How I found the page: - magazine article My name is: Dr Steve MacGregor Comments about the web site: My beautiful wife contracted this horrible disease in Feb 1999.It occured following the birth of our fourth son.She spent 3 weeks on life support in the ICU.Retained placenta may have played a role.We are so lucky she surrived.Unfortunately,her kidneys are permenantly damaged. We are hopeful for a transplant.God bless all who have experienced this illness in any way. I'm from: KITCHENER ONT CANADA Email: - smacgregor@canada.com How I found the page: - SEARCH ENGINES My name is: Pam Harrison Comments about the web site: Hi it^s me the sister from hell, I feel so angry that my sister Julie contracted NF. She had ( apparently) a ruptured appendix that led to her getting the NF? For a little extra she then caught MRSA in the hospital, which they told us was nothing to worry about? What is worrying me is did she catch the NF bug in the hospital?? I'm from: HINCKLEY. ENGLAND Email: - harpam45@netscapeonline.co.uk How I found the page: - researching NF My name is: Eleanor Pressnell Comments about the web site: My sister who lives in Washington state is in the hospital with NF and was also diagnosed with diabetes upon entering the hospital. It is difficult for me to help from Michigan except for calling every day and offering words of encouragement. She has had two surgeries and has been concious throughout. She sounds quite normal and that is good, but I certainly did not realize the seriousness of her condition until she told me it was life- threatening. I believe she is out of danger now, but I don't really know. I'm from: Kalamazoo, MI Email: - epressnell@webtv.net How I found the page: - by searching "Fasciitis" My name is: Amber Comments about the web site: My father-in-law has this, but it seems to have developed in such a different way. We think he may have gotten it from work. He basically has it through the abdomen. He has had it since the middle of Dec `99, had surgery in late December and that's when he was dignosed. He is home now and has two nurses come by twice a day to change his packing. He is open in two places in his abdomen. I feel for all of you out there and my prayers are with you. Feel free to contact me. I'm from: Senatobia, MS Email: - ForeverAmber70@hotmail.com How I found the page: - from my cousin...actually about how the banana story was a hoax My name is: Vanessa Wright Comments about the web site: Back in September 98 i went into hospital to have a routine breast reduction operation. After the op they said i had a poor blood supply to my left nipple and they were supposed to keep an eye on me!!!! The day after my op i began to get unwell, temp of 39, sickness and diehoere, bp not taken, i was flused red all over, my body and was itching, yet accoring to the medical staff i was allergic to the sheets and i had a stomach bug!! 2 days after surgery i started to become confused and disorientated, 3 days after op they took me into a side room and had a look for a heomatoma under my nipple as it was blue and necrotic. It was redressed and they said they would take another look in a couple of days!! 4 days after surgery they took me back into surgery and "had a look" yet still nothing was said, at this time they gave me my first dose of antibiotics. 5 days after op i was in renal failure and the hospital said i needed specialist care and transferred me to a renal unit at another hospital, on arrival by blue light to the new hospital they realised i was in multi- organ failure and went straight into ITU, i spent 5 weeks in ITU where i very nearley died several times, as well as renal failure i had bacterial endocarditis and had to have a external pace maker, i had lung problems and of course they eventually diagnosed Necrotizing Faciitis. The result of all this is have had my left breast removed and all the tissue back to the rib cage and 50% of my right breast removed. We have been seeking legal advice but we are having some problems! I would love to hear from any one else who accired this while having routine surgery in hospital, (expecially in the UK). I am now only 33 years old!!!!! I'm from: Watford Email: - sydney3@tinyonline.co.uk How I found the page: - searching web for info My name is: Kristen Wardrum Comments about the web site: My mother was diagnosed with NF on March 7th of 2000. So far she has had 4 surgeries to remove the dead skin. Before this happened to her I had never heard of the flesh-eating strain of the strep virus. She's had all the layers of skin across her abdomen removed. Luckily it hasn't entered her stomach cavity. Thanks to some nurses at the hospital my family is better informed about this disease. Our family and friends are all praying for her to beat this thing and I ask that you could say a little prayer for her too. Her name is Gloria and she means a lot to so many people. I am hoping to put a dedication in the survivor section on this site. Only time and God will tell. My heart goes out to all that have battled this disease and to those who have lost that battle..and the families that have gone through what we are going through right now. Thank you and God Bless. I'm from: Chicago, Illinois, USA Email: - Poochie78@aol.com How I found the page: - searching for info on necrotizing fasciitis My name is: GINA ERICKSON STIERLEY Comments about the web site: I AM A SURVIVOR OF THIS DISEASE. I AM NOW DISABLED DUE TO THE REPERCUSSIONS FROM MY SURGERY. IS THERE ANYONE OUT THERE WHO WOULD WRITE TO ME ABOUT THEIR RECOVERY?? MY SURGERY WAS 8/24/95; BUT, LAST YEAR I HAD 2 HEART ATTACKS DUE TO THE FACT I HAD "GUT EDEMA". I HAVE LOST 90 LBS. I AM GETTING STRONGER EVERY DAY, I STILL HAVE A LONG LIFE TO LIVE. I'M ONLY 42. I'm from: SAN CLEMENTE, CALIF. 92672 Email: - P.O. BOX 2913 CAPISTRANO BEACH, CALIF. 92624 How I found the page: - SURFING THE NET My name is: Steven R. Hall Comments about the web site: My Dad (Clyde A. Hall, age 78) died of NF on Feb. 29 ,2000. He had taken a fall in the back yard of his Florida home on the previous Sunday (no apparent injury). He complained of a soar neck on Monday evening. He awoke Tuesday morning complaining that he could not use his hand and thought he had suffered a stroke. He was taken to the hospital at about 6 a.m. on that day and died at approx. 6:30 p.m. that same day. He was a native of Petoskey, Michigan where he resided during the beautiful Michigan summers. I'm from: Portland, OR. Email: - srh@ptld.uswest.net How I found the page: - search engine My name is: Jan H. Comments about the web site: I am so appreciative of the many people who wrote their stories and posted them on the NNFF website. Every bit of information helps me better understand the symptoms of NF. Because of this website, I believe I will recognize the symptoms and know to suspect NF if it every happens to me or someone I know. The information that has been shared here may save lives. I found out about NF by receiving an email warning of "infected bananas." After doing a websearch, I found this site and learned better information than that! I'm going to send out a link to this site to everyone who received that email about the bananas. Thanks again, everyone who shared their story. I'm from: Email: - Lightlore@aol.com How I found the page: - websearch for NF My name is: Sharon Buzan Comments about the web site: I had necrotizing fasciitis 2 years ago and was one lucky chick. My boyfriend saved my life by making me do something about my "really bad flu" and "bad bump". I would have laid in bed and become unconscious before I'd have thought I was sick enough to get help. I was one of the lucky ones in being diagnosed and treated quickly at Research Hospital, Kansas City, MO. Seven days there, 2 surgeries & I was back at work in 9 days. I'm from: Kansas City, MO, USA Email: - sbuzan@kc.rr.com How I found the page: - looked for it My name is: Kirsty Comments about the web site: I have a friend in the hospital fighting this terrible disease. They have improved his status from 20% survival to 50% survival. I always thought this disease hit only the people you read about in the news paper, not someone you know. Knowing the symtoms and demanding agressive testing and treatment are the only chances for survival. We are still praying for our friend, he is going in for his second surgury tomorrow. This is his second since the initial scratch only 5 short days ago. Thank you for all of the information. I'm from: Toronto, Ontario, Canada Email: - costello@ica.net How I found the page: - Searching for information My name is: Cindy Kinnison, RNC E.mail=cindyk@huntel.net Comments about the web site: Very good information, site was a little hard to find for some reason. Maybe it was me. I'm from: Osmond, Ne. Pierce county Email: - cindyk@huntel.net How I found the page: - jumping around the net for about an hour. Finally through alta vesta search My name is: Susan Snyder Comments about the web site: Outstanding site. Thank you. A close friend of mine, Lauri Spina, died on March 5, 2000 of NF after getting cut on her left finger 5days prior to dying. She had the classic symptoms. No one close to her knew of NF. She lived outside of Toronto, Canada. She was due to visit her home state of AZ during spring break. Instead, we attended her funeral. She had just turned 37 in Jan. 2000. She is survived by her husband, Dan and 3 young daughters. She was a faithful Christian, who had a passion for helping women and was very active in Women's Ministry in her church. Her death has left a large void in many lives, but we know she is with our heavenly Father. I'm from: Gilbert, AZ, USA Email: - c.ssnyder@juno.com How I found the page: - my sister in Vancouver, WA notified me of it. My name is: George Vanovich & Melinda Hillmer Comments about the web site: We have set up a web page for our friend Mary Catherine Habeck-Leighou who was stricken with NF. The address is www.rtd.com/~vanovich/mary_catherine Help them if you can. Thanks, I'm from: Tucson, AZ Email: - vanovich@rtd.com How I found the page: - friend My name is: justin jobes Comments about the web site: very good info. I got every thing i needed to know I'm from: el cajon ca u.s. Email: - How I found the page: - from my teacher My name is: Jerri Anderson Comments about the web site: Recovering Victim of a "tiny little cut" on my hand. Sounds much like Donna Batdorff's story except I am diabetic and it progressed much more rapidly. After too much time in local hospital was transferred to burn unit at Tampa General Hospital. All things considered they did a great job! I'm from: Winter Haven, Fl Email: - JAnde63419@AOL.Com How I found the page: - Ladies Home Journal Article My name is: nichole plassenthal Comments about the web site: I am greatful that you are making people more aware of this type of infection. My mother recently contracted this bacteria after a hernia operation, and thanks to one doctor who insisted the symptoms she was having were caused by N.F. she is recovering. Thank you for putting this information out there. I'm from: delaware, ohio Email: - How I found the page: - My name is: Kristen Wardrum Comments about the web site: I have written previously about my mother having NF as of March 7, 2000. She has now had 5 debriding surgeries and as of the last one part of her right lung collapsed. I spoke with a nurse about that and she said it can be restored which is good news. Saw her doctor today and he mentioned a plastic surgeon would be in to speak with my mom about closing up her wounds. She had been tranferred out of the SICU a few days ago, but after her last surgery they put her back there. My family and our friends and their friends and even people online have been praying for her speedy recovery. I thank God that she has made it this far and I'll keep praying that she makes it all the way. If you can please send her a card or a note...as she's been a bit depressed lately with all the surgeries she has been through. Thank you all for sharing your stories...Hopefully doctors will learn how to diagnose and treat NF better... Resurrection Medical Center Gloria Wardrum 7435 West Talcott Ave Surgical Intensive Care Unit(SICU) room # 14 Chicago IL 60631 I'm from: Chicago IL USA Email: - Poochie78@aol.com How I found the page: - searching for necrotizing fasciitis My name is: Tom Fleener Comments about the web site: Lost one entire arm and part of side and shoulder to this in Jan of 1999..... I'm from: Belmond, Iowa usa Email: - dbancroft@kalnet.com How I found the page: - article in magazine My name is: allie l. Comments about the web site: thanks for visiting our school I'm from: Email: - How I found the page: - |
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