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!

My name is: Sue West

Comments about the web site: I read this page often, but have not made an entry since I first got out of the hospital in 1997. I am wondering if any other survivors out there have experienced problems with weakened immune systems? A year after my initial bout with NF (26 surgeries-two months ICU, etc..), I had a muscle transfer which resulted in another serious infection (not NF, but 6 more surgeries and another month in the hospital, etc..). I have seen immunology and infectious disease and have been told that "due to the severity of the original infection, I am highly susceptible to future infection". My skin grafts often get infected (I now call it spontaeous infection)and I seem to get a lot of strep throat. I am now facing more surgery (unavoidable, belive me I tried!) and wonder if anyone has had similar problems and possibly gotten a more specific diagnosis. My doctors are trying to make sure that everything possible is done in advance to avoid infection, but I want to make sure I've done everything I can. For those of you who've been through it, you know how terrible it would be to go through it again. I've done it twice already. If anyone has any thoughts please email me.

I'm from: Boston, MA

Email: - swest6602@aol.com

How I found the page: -

My name is: Renae Kaip

Comments about the web site: It's such a scary disease, I hope one day they'll be able to eliminate it completely.

I'm from: Bemidji, MN, USA

Email: -

How I found the page: - surfing

My name is: Karen Rottiers

Comments about the web site: Was diagnosed with necrotizing faciitis in June of 1996 after two weeks of unsuccessful treatment by a doctor who didn't know what was wrong.Was out of work for three months after a week's hospital stay.

I'm from: Eastpointe, MI USA

Email: - KarenMom0947@hotmail.com

How I found the page: - search for necrotizing faciitis

My name is: jackie parn

Comments about the web site: I'm reading this information becauw my sister in law is in Mayo's and was just diagnosed with this disease. Her affected area is her leg and ankle.

I'm from: Quincy, Il. USA

Email: - jparn@blessinghospital.com

How I found the page: -

My name is: Gordon J. Novak

Comments about the web site: Having survived (just barely) this one month ago I am happy to see such an informative site.

I'm from: Vancouver, BC, Canada

Email: - gord_novak@hotmail.com

How I found the page: - search engine

My name is: Keith

Comments about the web site:

I'm from:

Email: -

How I found the page: -

My name is: Danette

Comments about the web site: My mother died 09-26-99 of this terrible disease. It took her so quickly we didn't really know what she died of except an infection. I found it listed as the secondary cause of death. The primary was multi-system organ failure. I hope more people can learn of this horrible thing that lurks out there and nobody thinks it can hit them but it can.

I'm from: Maryland

Email: - Virgo0823@aol.com

How I found the page: - Excellent

My name is: Mark J. Boyd LPN

Comments about the web site: This is a wonderful site. Thanks for all the great info so that I may pass on this on to my fellow nurses.

I'm from: Piketon, Ohio USA

Email: - boydaurus@hotmail.com

How I found the page: - yahoo! search engine

My name is: cid6000

Comments about the web site: I didn't even know this existed

I'm from: pueblo, colorado u.s.a.

Email: -

How I found the page: - I found it through yahoo

My name is: dennis

Comments about the web site: i had to do a school pr0ject this site is really updated and simp;e

I'm from: canada

Email: -

How I found the page: - ?

My name is: Gloria

Comments about the web site: Last week my lovely 20 year old neice died. she had given birth to a fine baby boy on Saturday night and was discharged home on Monday. Tuesday she was not feeling well and went to see her doctor. They told her she had a UTI and sent her home on oral antibiotics. By Friday she was still not feeling well and returned to the doctor. Again she was sent home. On Saturday she was in terrible pain from swelling in her leg and went to the Hospital. Her condition worsened and she died the next day. As I looked at my lovely young niece it broke my heart to see what this horrible bacteria (Strep A)had done to her. Her once beautiful face and body were now so swollen. I am angry, I am saddened. How can this happen? Why did the doctors not recognize the fact that she was sick. Why did they NOT DO blood work to find out what was really wrong. Is there any justice? Thank you for this web site, maybe more people will be made aware and be spared the anguish that my family has had to face this week. This all happened from an uncomplicated pregnancy and birth. Friends, insist on complete medical care. Read the symptoms and the ways to help to prevent infection. Take precautions before it is too late.

I'm from: New York state

Email: -

How I found the page: - Reasearching the disease to hopefully make sense of it all.

My name is: Michael Hanley

Comments about the web site: I am a television reporter for NBC-8 TV in Columbia, Missouri. I'm doing a story about a young lady who contacted the disease, and we are doing what we can to inform the public about the horrible bacteria. Thanks for putting this page up! Mike Hanley

I'm from: Columbia, Missouri, United States

Email: - mph34b@mizzou.edu

How I found the page: - I was told about it from a bacteria survivor

My name is:

Comments about the web site: A case has been reported here. My heartfelt condolences go out to the family. It saddens me that another death has occurred from invasive strep A when not too long ago there was another death at Strong Memorial Hospital in Rochester,NY. The woman also had recently given birth. Her death had been widely publicized in the Syracuse area. When are doctors going to consider NF as a possibility in their diagnosis of a patient???

I'm from: Syracuse, NY

Email: -

How I found the page: -

My name is: Maria

Comments about the web site: I am writing a paper on strep a. this was a very informative site. thank you.

I'm from:

Email: -

How I found the page: -

My name is: Sharon

Comments about the web site: I had NF in the summer of 94. I made several calls to my Dr and three trips to the hospital before being admitted. Even after 7 weeks in ICU and many antibiotics they told my husband that they didn't think I would make it. To this day, I think, the only reason I did, is because this thing had infected my eye. After months of suffering, I finaly made the decision to have my eye removed in an attempt to end the extrem pain I was in. I now have a glass eye, but still have a lot of pain. The depression is very difficult. I know I'm luck to be alive and thank God to finaly have found this sight so I could learn more about what I have had. The hospital told me nothing. Thank you so much, you've realy helped me.

I'm from: Duxbury, Mass

Email: - SHAFRED1@AOL>COM

How I found the page: - a fellow suffferer

My name is: Vicki Staton

Comments about the web site: I have just read an entry made by Gloria on October 23rd and I feel I have to leave a message in the hope that you will read it. Gloria, my heart and soul go out to your family, I know where you are coming from and I know where you will be going to in the months that follow. If you ever feel the need to talk, e-mail or telephone I am happy to help. If you wish talk on the telephone please e-mail as below and I will give you my telephone number. I do not have the words to help but I hope that you know that if you need to talk I will be there for you. Take care of that lovely baby, and of yourselves. You are in my thoughts and prayers.

I'm from: Berkshire, England

Email: - rodnic@compuserve.com

How I found the page: - I am a regular visitor!

My name is: BRIAN DARREY

Comments about the web site: THIS SITE MEANS NOTHING BUT AN A+

I'm from: DES PLAINES, ILLINOIS

Email: -

How I found the page: - LUCKY GUESS

My name is: Gary R. Denig

Comments about the web site: In Jan.1997, my life changed forever. I tripped and my arm hit a concrete step and initially they diagnosed and treated the disease as a bacterial strep infection, but it wasn’t until Nov. 1998, that the disease was identified as Flesh Eating Bacteria. In my case, the bacteria began to destroy the tissue and muscle in my right arm. Thus far, I’ve had 25 surgeries including five skin and one muscle grafts and I have received 20 hyperbaric oxygen treatments. I’ve been treated in five hospitals including the Mayo Clinic and Cleveland Clinic, and have been in ICU critical care three times. In Nov 98, disease nearly took my life; the bacteria was spreading rapidly through my blood and I was taken into emergency surgery and placed in ICU. The Doctors told my wife that the bacteria had moved up my arm and it was simply a matter of time before it would hit my heart. They told her I might not make it through the night. But, God had other plans and He wasn’t done with me. In Feb of this year, I had a reoccurrence that was attributed to the toxins that were left behind from the bacteria and I was admitted with a temperature of 105.9 and placed in ICU. This time, the surgeons opened my arm up completely from the wrist to above the elbow, so that they could look for any residual bacteria or toxins. My arms was completely debrided and then in late March, I received a skin graft However, in May, the skin graft broke down, so in June, I had to have another skin and muscle graft. My prognosis: As of last Thursday, I had an MRI that showed no evidence of any bacteria and the muscle looked healthy. Presently, my arm is frozen in a 90 degree angle and I have to undergo a procedure under anesthesia where they will break through all the scar tissue. As far as physical therapy, it has been tried, but breaking the scar tissue is my only hope of regaining usefulness. The infectious disease doctors have told me that my arm is not "out of the woods" though, because bacteria breeds and is fertilized by scar tissue. Normal tissue has immune cells to counteract any infections (insect bites, bruises, scrapes, etc.), scar tissue does not have immune cells, therefore, it lacks the ability to fight any infections. And, my arm after 25 surgeries is held together by bone and scar tissue. If the arm was the only thing that was affected it would not have been so bad, but, there is more. For instance, in mid April 1997, I was suicidal and had to be hospitalized for depression. Then, the migrane headaches started. All this while, I was still being operated on in 1997 and 1998. I also had I don't know how many IV catheters during these last three years. Suffice it to say, my left arm has been completely "burned up" by all the IV antibiotics. Doctors say that it will take 10 to 15 years for my arm veins to heal. They can't even stick me in the arm to draw blood. So, I had to have catheters placed in my chest, and they became infected. I have had five different catheters inserted. And, in March of this year, I developed blood clots in my chest which was life threatening (from the IV's clotting). The physical challenges overshadow the emotional toll. In April of this year, I was hospitalized because my body developed an addiction to Demerol and when the narcotic was terminated, I went through withdrawal and had to be hospitalized. But, the diisease has affected more than the emotional and physical aspects. Financially, it's been traumatic. My medical bills are staggering: +$1 million. This illness has also been difficult on my family. For the last three years, my family have had to endure the trauma of having me constantly hospitalized. From Nov 1998 through June 1999, I was hospitalized ten times x in eight months. Throughout the entire years of 1997 and 1998, every holiday, birthday or anniversary, I was hospitalized, or I’d just come home and was too sick to enjoy the occasion. On the other hand, before this illness, I was always traveling or staying in a Hotel, but, this illness has brought my family closer together and closer to God. I thank you for listening - it's been cathartic. Thank God my wife has been patient with me while she typed this in. I thank God for an organization like yours that can spread information about this disease to health care professionals. When my story hit the national media, I received calls from all over and some of them were very, very sad, like the one's that I've read. I give God the praises for my life, that I am still here with my arm intact inspite of it's very limited usefulness.

I'm from: Wapakoneta, Ohio

Email: - grd@bright.net

How I found the page: - Wife located while surfing "flesh eating bacteria"

My name is: Tom Crawford

Comments about the web site: Today (Oct. 30, 99) my wife and I were watching our eldest son at his swim meet. Next to us was a gentleman with two prosthetic legs (beginning just below the knee) and was missing the better part of his left arm and on finger on his right hand. I thought nothing of it, assuming "war injuries" or something similar until another in our party mentioned that she thought the man was a doctor that had dealt with the "flesh eating bacteria." I thought I would try to find out more about it, since I have heard very little on the subject. Thank you for your candor and upbeat attitude! I truly appreciate the info you have provided.

I'm from: Tucson, Arizona, USA

Email: - crawfordte@cs.com

How I found the page: - Search engine