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!

Nov 2, 1998 - 13:52

My name is: michelle

Comments about the web site: i'm researching this disease for school and i came across this site. i'n sorry to hear about everyones misfortume but it gives me strenght knowing the courage that you guys have. i hope nothing but the best for you and prosparity.

I'm from: irving texas

Email: -

How I found the page: -

Nov 2, 1998 - 17:22

My name is: Elzray Peugh

Comments about the web site: I am from Missouri city which is near Houston Texas. I think this is a very good work that you and the other young lady are doing.

I'm from: MISSOURI CITY ,TEXAS

Email: - epeugh@houstonisd.tenet.edu

How I found the page: - I was pointed to this location by the Principal.

Nov 3, 1998 - 11:33

My name is: Alvaro De La Mora, Jr., R.T.(R)

Comments about the web site: Take you very much for all the information that you have written on this rarely unknown bacteria. I am a PA (Physician Assistant) student a Wake Forest Medical School. I needed to gather some vital information for a class presentation. Thank-you once again, and you can be sure that when I get home tonight there will be a donation in the mail to aid in your organization. Thank-you, Alvaro De La Mora, Jr. R.T.(R) "soon to have PA-C"

I'm from: Originally Miami, Fl. Studying in Winston-Salem, NC, USA

Email: - adlmora@wfubmc.edu

How I found the page: - Net browser "necrotizing fascitis"

Nov 3, 1998 - 13:49

My name is: Dave Henry

Comments about the web site: You have a very good page even though it sucked a big one

I'm from: Sayward, British Columbia,Canada

Email: -

How I found the page: - A report I had to write

Nov 3, 1998 - 14:11

My name is: Shantel Lyon (DUCKI)

Comments about the web site: Over the summer I worked at a summer camp and was given the oppertunity to work with teen from all around the world that have NF. They touched my heart and I found the most beautiful people in the world. I love them and even though I do not have NF, I commend all of the people that are fighting this disease.You are an example unto many thankyou.

I'm from: Utah

Email: - lyonsh9926@slcc.edu

How I found the page: - I was looking for information on NF. One of my friends found his tumors (from NF) to be cancerous!

Nov 3, 1998 - 14:17

My name is: Shantel Lyon (DUCKI)

Comments about the web site: Over the summer I worked at a summer camp and was given the oppertunity to work with teen from all around the world that have NF. They touched my heart and I found the most beautiful people in the world. I love them and even though I do not have NF, I commend all of the people that are fighting this disease.You are an example unto many thankyou.

I'm from: Utah

Email: - lyonsh9926@slcc.edu

How I found the page: - I was looking for information on NF. One of my friends found his tumors (from NF) to be cancerous!

Nov 3, 1998 - 17:44

My name is: Ann Perry

Comments about the web site: To all of you who are experiencing the torment of NF, Please know that as terrible as it is, IT CAN BE BEATEN! My brother Grant was diagnosed with NF on June 3, 1998. He immediately went into surgery for a very radical debridement under his arm. He was given a 10% chance of living! He had 16 IV lines connected to him, full respiration, kidney dialysis and full blood transfusions. He was loaded with drugs that would keep him motionless. He needed every ounce of energy just to survive. He was on full life support for over 2 months. We watched his hands and feet turn black and we were prepared for amputatiions. They said his liver was gone and that he would require a full kidney transplant. He had lost 70% of his oxygen to his brain for over 20 minutes. We were told 2 1/2 weeks into it that he only had 5-30 minutes left to live and he would go into a massive heart attack and die. We agreed not to recessutate after learning that his brain was damaged. We went a full day grieving his death only to find out he was still alive! His white blood cells had declared war and were killing each other off. He was on MASSIVE amounts of antibiotics to kill the sepsis (blood poisoning) which was a complication of the NF and toxic shock he was in. We were never given any hope. Then 11 weeks into it his heart stopped 3 times in one day. Not a good sign. He had an awful brain seizure which went for over 4 minutes. His MRI showed what was described as the WORST MRI the head neurologist had seen ever! 24 hours later Grant woke up and started to ask very intelligent questions! He was not brain damaged at all! He soon left the trauma unit and is now home recovering as we speak! In fact he's going on a vacation to Jamaica next week for 2 1/2 weeks! If he can make it through all of that...ANYONE CAN MAKE IT AND WILL! The key is early diagnosis and DON'T EVER EVER GIVE UP! THE DOCTORS ARE USUALLY VERY GOOD, BUT ULTIMATELY THEY DON'T KNOW WHEN OR IF A PERSON WILL DIE... AFTER ALL, IT'S NOT UP TO THEM! Grant's story is now being written up in the NEW ENGLAND JOURNAL OF MEDICINE as a MIRACLE! His brain is fine, he had no amputations, his kidneys recovered beautifully and he's gaining new strength every day! NEVER STOP BELIEVING IN THE HUMAN SPIRIT! It's strong! He says that even while he was in his coma, he knew we all loved him and were out there waiting for him and ultimately we needed him! I welcome anyone to write who might need a little encouragement or just to share your story. Having been there and done that...maybe I can help in some small way. Ann :-)))

I'm from: Halifax, Nova Scotia

Email: - andperry@netcom.ca

How I found the page: - Searching for info on NF

Nov 4, 1998 - 11:47

My name is: Melanie Keller

Comments about the web site: Very imformative and helpful

I'm from: Canada

Email: -

How I found the page: - my teacher showed it to me

Nov 4, 1998 - 15:41

My name is: Jack A. Field

Comments about the web site: A survivor too

I'm from: East Wenatchee , Washington

Email: - jjfield@gte,net

How I found the page: - o.k.

Nov 4, 1998 - 15:45

My name is: Jack A. Field

Comments about the web site: A survivor too

I'm from: East Wenatchee Washington

Email: - jjfield@gte.net

How I found the page: - O.K.

Nov 5, 1998 - 10:57

My name is: Vicki Staton

Comments about the web site: It is good to see that awareness in the States is being increased, but this is not yet the case in the UK, most people look at you blank when you tell them you have had necrotising fasciitis. I was lucky to have a consultant who had seen the bacterial infection before, however I was still not diagnosed for two weeks, despite being unable to walk, and displaying numerous other classic symptoms. I was infected with Strep B following the birth of my son and was cleared with two debridement operations, a blood transfusion and three months of antibiotics. It was a very frightening experience, but I will be eternally grateful to my friends and family for their support and love. Also thanks to Suzanne Pender and Don Morris in Boston MA for their knowledge and advise. Not the ideal start with a new baby, but nearly seven months down the line and I am physically fine, but still coming to terms mentally with what has happened to me.

I'm from: Reading, Berkshire, England

Email: - rodnic@compuserve.com

How I found the page: - Through friends helping my family find out what NF is.

Nov 5, 1998 - 16:04

My name is: Christie Register, RN, JD

Comments about the web site: This web site is very helpful. It is obvious that much effort has been put into this organization.

I'm from: Savannah, GA USA

Email: - ChrisRNJD@aol.com

How I found the page: - altavista- looked up necrotizing fasciitis

Nov 5, 1998 - 22:25

My name is: Ernest

Comments about the web site: THANKS FOR ALL YOUR INFORMATION..I WISH YOU HAD SOME PICTURES THOUGH

I'm from: CASTIC,CALIFORNIA

Email: -

How I found the page: -

Nov 6, 1998 - 11:08

My name is: Joel Mc@llister

Comments about the web site: WOW!

I'm from: NEVADA

Email: -

How I found the page: - REPORT

Nov 6, 1998 - 12:32

My name is: Jackie Roemmele, cofounder NNFF

Comments about the web site: What incredible entries I'm reading! It never gets easier for me to read new cases of NF, but I am really touched to know that survivors and families of those who have died are reaching out to each other. I'd like to remind people who filled out the Research Questionnaire to PLEASE sign and return the permission forms to Dr. Bisno. Without them, we cannot research your medical records and include your information in our study. Please be assured that your privacy will not be violated in any way! If you have questions, E-Mail me at jroemmele@aol.com, and I'll be happy to answer them for you. This study is so very important!!! As you know reading this guestbook, there is case after unnecessary case of misdiagnosis, leading to death or severe disfigurement. With your help, we can educate doctors to recognize symptoms much earlier in the course of the disease. So PLEASE get those forms off your coffee table and in the mail!! God Bless and Happy Thanksgiving! Jackie

I'm from: Niantic, Connecticut

Email: - jroemmele@aol.com

How I found the page: - oh, I think it found me!!! :-)

Nov 9, 1998 - 17:28

My name is: shawn godfrey

Comments about the web site:

I'm from: alexandria minnesota america

Email: -

How I found the page: - a friend

Nov 9, 1998 - 22:48

My name is: susan fairfield ca

Comments about the web site:

I'm from:

Email: -

How I found the page: -

Nov 9, 1998 - 23:02

My name is: susan fairfield ca

Comments about the web site: i lost my mother to this terrible flesh eating killer in dec 1997,my mother had diabetes,she lived in ohio. i left cali on nov 15 to fly home by the time i got there she had two surg and the blackness was moving to new areas the doctors said all the could do was keep cutting the black and green areas off.this was the most horrible death you would ever experience,she was only 60 years old i miss her so very much,i think of her daily.

I'm from: fairfield,ca usa

Email: - toyrav38 @yahoo.com

How I found the page: - doing research on this i wanted to learn more

Nov 9, 1998 - 23:11

My name is: susan fairfield ca

Comments about the web site: i lost my mother to this terrible flesh eating killer in dec 1997,my mother had diabetes,she lived in ohio. i left cali on nov 15 to fly home by the time i got there she had two surg and the blackness was moving to new areas the doctors said all the could do was keep cutting the black and green areas off.this was the most horrible death you would ever experience,she was only 60 years old i miss her so very much,i think of her daily.

I'm from: fairfield,ca usa

Email: - toyrav38 @yahoo.com

How I found the page: - doing research on this i wanted to learn more

Nov 11, 1998 - 15:35

My name is: Lynn Burns

Comments about the web site: I found this site about a year ago when a dear friend was suffering with NF. I learned a lot from what I read here, and in fact it prepared me for some very real and very scary possibilities. I am so glad to be able to celebrate with her a very special birthday this weekend. Carol, I wish you the happiest birthday of your life on November 13, and I look forward to enjoying your company on Saturday night!! You are so brave and I am so proud of you. I love you!

I'm from: Madison, WI USA

Email: - n/a

How I found the page: - Search engine/research

Nov 12, 1998 - 10:44

My name is: NIcole Johnson

Comments about the web site: This is a wondeful site. I had to do a research paper for school and your site helped me learn alot. Thank you. You guys are doing a wonderful thing.

I'm from: Romulus, Michigan

Email: - Romulus High School

How I found the page: - In school!

Nov 12, 1998 - 14:38

My name is: L brydon

Comments about the web site: Thank you for this site. I am a nursing student at British Columbia Institue of Technology. We are researching various diseases and Necrotizing Fasciitis is the one we choose. Thank you for providing us with this information

I'm from: Burnaby BC Canada

Email: -

How I found the page: - Yahoo

Nov 13, 1998 - 10:13

My name is: C. Porter

Comments about the web site: I am searching for information concerning anyone who may have contracted NF from an injury inflicted by another person. I know of two cases where this has led to criminal action. If anyone has any information of this nature, please contact me.

I'm from: Columbia, S.C.

Email: - CAREY7278@aol.com

How I found the page: -

Nov 15, 1998 - 11:19

My name is: Martin & Diana Cahill

Comments about the web site: Sadly, our family found we had joined the ranks of people who have lost a dear family member to this deadly and vicious disease. Our dear son Matthew was taken from us in a matter of hours inspite of the desparate actions taken by the doctors who attended him. A beautiful light was taken from this world when we were told he had died on the operating table. We will e mail and give you his story. Regards, Diana

I'm from: Kingston, Ontario, Canada

Email: - mcahill@cgocable.net

How I found the page: - searching for information

Nov 16, 1998 - 01:15

My name is: Jenny Ricard

Comments about the web site: Your site was very informational and ahhh...yet so true. I myself survived the "flesh eating bacteria," with only a small scar to prove it. The reason I looked you guys up is because of a young boy (8 years old) who is struggling for his life right now due to NF...he has already had his leg amputated and is in intensive care here in Seattle. I'm asking you to please put him in your prays!!!

I'm from: Seattle, Washington

Email: - imz1unv@hotmail.com

How I found the page: - looking up "flesh eating bacteria" and stumbled upon this page

Nov 16, 1998 - 10:44

My name is:

Comments about the web site: my husband contracted nf while serving in the military. he kept his leg that was afflicted. he now has a series of lumps where he was infected 4 years ago. the doctors are not quite sure what it is. if anyone else who has kept their limb that was infected knows what may be wrong with my husband please post it on this web page. our names must remain anomynous because of the military affiliation of this matter.

I'm from:

Email: -

How I found the page: -

Nov 16, 1998 - 10:46

My name is:

Comments about the web site: my husband contracted nf while serving in the military. he kept his leg that was afflicted. he now has a series of lumps where he was infected 4 years ago. the doctors are not quite sure what it is. if anyone else who has kept their limb that was infected knows what may be wrong with my husband please post it on this web page. our names must remain anomynous because of the military affiliation of this matter.

I'm from:

Email: -

How I found the page: -

Nov 16, 1998 - 10:47

My name is: Jane Doe

Comments about the web site: my husband contracted nf while serving in the military. he kept his leg that was afflicted. he now has a series of lumps where he was infected 4 years ago. the doctors are not quite sure what it is. if anyone else who has kept their limb that was infected knows what may be wrong with my husband please post it on this web page. our names must remain anomynous because of the military affiliation of this matter.

I'm from: blank

Email: -

How I found the page: - net search

Nov 16, 1998 - 11:28

My name is: Natasha

Comments about the web site: My Stepfather was recented diagnosed with Strep A, due to an abrasion on his leg. He is now on IV (at home) with a nurse coming in three times a day. I just wanted to let you know how helpful your site has been to me. It has helped me to understand what we are dealing with.

I'm from: Toronto, Canada

Email: - nmoyles@agpo.baton.com

How I found the page: - Searched for it.

Nov 16, 1998 - 15:49

My name is: Brandy Gibson

Comments about the web site: My brother has the flesh eating disease. He is 18 and it affected his left leg from knee down.

I'm from: Charleston, SC USA

Email: - bcmgibson

How I found the page: - AOL net find...Donna's Email

Nov 17, 1998 - 12:57

My name is: Bob Gillespie

Comments about the web site: I found that all the information you have is very useful, I used this web-site for information on this disease for my biology project

I'm from: Canada

Email: -

How I found the page: - librarian

Nov 17, 1998 - 17:20

My name is: Gerry Duren

Comments about the web site: Good info on the flesh eating bactiera.

I'm from: sparks, NV USA

Email: -

How I found the page: - infoseek

Nov 17, 1998 - 20:59

My name is: Reena Rughani

Comments about the web site: I had the bacteria in Feb, 1997 and lost my left leg at the hip. I wish I knew what it was before and how I could have avoided the situation. All I can say is that I survived thanks to some great doctors.

I'm from: Bellingham, WA, USA

Email: - rughanir@hotmail.com

How I found the page: - surfing the net

Nov 17, 1998 - 21:30

My name is: Liz Drysdale

Comments about the web site: Thank goodness that NNFF is making people sit up and take notice of this horrible disease. I think that it is more prevalent than it seems. After reading considerable material about NF, it seems that a major dose is eminating from health care units. Could this be so?

I'm from: Montreal, Canada

Email: -

How I found the page: - Through relatives who lost a love one to NF.

Nov 18, 1998 - 18:38

My name is: Robert L. Holland

Comments about the web site: I am a survivor! I have lost the use of my right arm, but I am alive.

I'm from: Monroe, NC 28111, USA

Email: -

How I found the page: - friend

Nov 19, 1998 - 15:57

My name is: CYNDY SCHNELL

Comments about the web site: MY DIABETIC MOTHER AT 74 YEARS OLD CONTRACTED NF IN JULY 1997 THROUGH AN INFECTED HAIR FOLLICLE IN HER RIGHT LEG. AFTER ENDURING SIX SURGERIES IN FIVE WEEKS, LOSING MOST OF THE MUSCLE IN HER UPPER RIGHT LEG, LOSING MASSIVE TISSUE IN HER LEG AND GROIN, SEVERAL SKIN GRAFTS AND TWO MONTHS IN THE HOSPITAL, SHE "SURVIVED". SHE IS NOW IN A NURSING HOME WITH MANY HEALTH PROBLEMS. WE ARE GLAD TO FIND THIS INFORMATION AND TO KNOW THAT OTHERS HAVE SURVIVED. AFTER LEARNING MORE ABOUT NF MY FAMILY AND I ARE AMAZED THAT SHE DID SURVIVE SUCH A MASSIVE, INVASIVE INFECTION. WE WERE TOLD IF SHE HAD GONE ANOTHER 8 HOURS OR LESS SHE WOULD HAVE BEEN DEAD. IT IS A HORRIBLE, HELPLESS EXPERIENCE TO WATCH. BLESS YOU ALL WHO HAVE LIVED THROUGH THIS.

I'm from: BREMERTON, WA

Email: -

How I found the page: -

Nov 19, 1998 - 17:00

My name is: ANNETTE AND SONIA

Comments about the web site: THIS IS A GOOD RESOURCE CENTER OF INFORMATION. MY MOTHER HAD A BOIL LANCED AND A DRAINAGE TUBE WAS INSERTED,TWO DAYS LATER SHE WAS NOT COHERENT,I CALLED THE AMBULANCE TO HAVE HER TRANSPORTED TO THE HOSPITAL, A FEW DAYS LATER THEY DIAGNOSED HER WITH NF. WERE HAPPY TO HAVE THIS CENTER. THANK YOU.

I'm from: MARYSVILLE,CA.

Email: -

How I found the page: - SEARCHING THE NET FOR NF.

Nov 19, 1998 - 17:02

My name is: ANNETTE AND SONIA

Comments about the web site: THIS IS A GOOD RESOURCE CENTER OF INFORMATION. MY MOTHER HAD A BOIL LANCED AND A DRAINAGE TUBE WAS INSERTED,TWO DAYS LATER SHE WAS NOT COHERENT,I CALLED THE AMBULANCE TO HAVE HER TRANSPORTED TO THE HOSPITAL, A FEW DAYS LATER THEY DIAGNOSED HER WITH NF. WERE HAPPY TO HAVE THIS CENTER. THANK YOU.

I'm from: MARYSVILLE,CA.

Email: -

How I found the page: - SEARCHING THE NET FOR NF.

Nov 20, 1998 - 21:57

My name is: Angela Rausch

Comments about the web site:

I'm from:

Email: -

How I found the page: -

Nov 20, 1998 - 22:01

My name is: Angela Rausch

Comments about the web site: I have seen this first hand. I was a student nurse working with a patient who had it. She went threw a lot of pain to get it under control. I did not understand exactly what she had or how she could have gotten it. Your web-page opened my eyes to what she really had and how she could have gotten it. Thank You.

I'm from: Shawnee, Ks

Email: - Auchtein

How I found the page: - Researching

Nov 21, 1998 - 09:09

My name is: Tom Argeerts

Comments about the web site: Nice, Can't anyone sent me some picture. I need for a lecture

I'm from: Belgium

Email: - Tom.Argeerts@uza.uia.ac.be

How I found the page: -

Nov 21, 1998 - 13:53

My name is: Geraldine Bean

Comments about the web site: I have emailed my comments in advance and I sincerely hope that you will have time to read them and possibly respond.

I'm from: I'm originally from Buffalo, New York, but currently in Baumholder, GE

Email: - beanw@interquest.de

How I found the page: - On the internet

Nov 21, 1998 - 16:05

My name is: KATHY HELTON WILKINSON

Comments about the web site: UNTIL MY GRANDMOTHER DIED FROM NECROTIZING FASCIITIS BACK IN JUNE OF 1998 I HAD NEVER HEARD OF THE DISEASE. SEEING HER SUFFER WAS DIFFICULT FOR ME AND MY FAMILY. I MISSED THE RECENT SEGMENT ON GUINESS.SO I WAS INTERESTED IN FINDING OUT ANYTHING I COULD ABOUT THIS. MY GRANDMOTHER WAS A SEVERE DIABETIC AND WAS ON DIALYSIS 3 DAYS A WEEK. WE ARE STILL NOT CERTAIN HOW SHE GOT THIS, BUT IT HELPS TO HAVE RESOURCES ON THE INTERNET THAT WE CAN OBTAIN INFORMATION FROM. I WAS TOUCHED BY THE STORIES OF SURVIVORS. THANKS FOR THE HELPFULL INFORMATION

I'm from: SANDERSVILLE GA USA

Email: -

How I found the page: - I FOUND YOU BY SURFING THE NET FOR INFORMATION ABOUT THE "FLESH EATING DISEASE"

Nov 22, 1998 - 21:20

My name is: Sandy Froelich

Comments about the web site: My father-in-law is in the hospital now for five days with this horrible infection, wanted to learn more

I'm from: Sunrise, FL,USA

Email: - FROEMOM@AOL.COM

How I found the page: - My mother found it while I was at the hospital and told me to check it out

Nov 22, 1998 - 22:24

My name is: Michelle-Leigh Pace

Comments about the web site: Looked at the site because I'm doing a project on it. Thanks a lot!!

I'm from: San Diego, CA

Email: -

How I found the page: - Yahoo: Necrotizing Fasciitis

Nov 22, 1998 - 23:37

My name is: David L. Robinson

Comments about the web site: Thank you

I'm from: Cusseta, Al. USA

Email: - dlr388@mindspring.com

How I found the page: - Surfing

Nov 23, 1998 - 11:50

My name is: Tiffany

Comments about the web site: This information is very clear and precise. Thanks a lot!:)

I'm from: NY

Email: - tucci80

How I found the page: - internet

Nov 24, 1998 - 17:14

My name is: Vince and Rohan

Comments about the web site: "GROOOOOOOOOOOOOVY Site!!!!" says Vince. Hi! My name is Rohan. Im Vince's friend.

I'm from: Good Question.

Email: - Rohan48@aol.com for Rohan and jamtherock@aol.com

How I found the page: - Vince remembered the URL.

Nov 25, 1998 - 20:23

My name is: R.B. Gustavson RN, CHT, CRTT

Comments about the web site: I treat NF on a regular basis in a hyperbaric chamber!!! When I first entered the field 5 years ago, I was told it is rare. However, at the large medical center I trained at, we saw a case a week and that was just those that were appropriately diagnosed. Keep up the good work

I'm from: Las Vegas NV

Email: - rbgus@aol.com

How I found the page: - Friend

Nov 26, 1998 - 09:17

My name is: Jackie Roemmele, cofounder NNFF

Comments about the web site: I wanted to wish everyone a Happy Thanksgiving. Among the blessings we're counting this year are the NNFF volunteers who reach out to victims, offering their support and kinship. Thank you so very much from both Donna and me. Without you, we could not accomplish our mission. God bless!

I'm from: Niantic, CT

Email: - jroemmele@aol.com

How I found the page: - :-)

Nov 27, 1998 - 18:27

My name is: DMH760mmHg

Comments about the web site: I work at a hyperbaric facility that see's about 5 or 6 cases per year. It is a difficult treatment regime and metally debilitating

I'm from: San Diego, CA 92111

Email: -

How I found the page: -