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ID: 100021 Time/Date: 01:37:10 PM PDT/ 06-28-2009
Name: roseanna ayres
Email Address: EmailAddress@notprovided.com
Story: I have been a critical care nurse for 25 years, but when I developed SJS/TENS in June, 1996, I had never heard of the diagnosis. I had seen one case of TENS caused by beta strep septicemia where I worked. I had been seeing an internal medicine physician from my hospital for at least a year due to chronic autoimmune symptoms. I had several symptoms of Lupus, but a negative ANA. Although I had been diagnosed with JRA and asthma at the age of 4 and with fibromyalgia in 1994, my doctor could not find anything else wrong. He even went so far as to imply my repeated visits and symptoms were a cry of attention from him! (At the time I was married with children ages 7, 4, 2). Needless to say, I was quite upset. I was finally given another NSAID to try, Feldene. I took the drug for two weeks before SJS symptoms developed. I woke up one morning with hives on my chest, face and arms. Thinking that I was having an allergic reaction to something that I ate the night before, I took a dose of Benadryl. It was my day off work, so I went about the daily mommy chores. The symptoms seemed to be getting worse, but since I was home and without a babysitter, I chose to take more Benadryl. As with most patients in shock, I did not realize how much danger I was in. I called my physician and left a message with the medical assistant. I never received a return phone call. By the time my husband returned home from work, I began to notice blisters inside my mouth and my eyes were hurting really bad. Despite how I felt, my husband insisted we go out to eat and then pick out the color for our new minivan. I continued to complain to my husband (who ignored me) and by the time we returned home I asked him if he thought I looked bad enough to go to the ER. He said he didn't think so, but to wake him up if I felt like I needed to go. Three hours later I drove myself to the ER without even waking him to tell him I was leaving. By the time I got to the hospital I could barely see the big red "emergency" sign at the entrance.


I had no blood pressure, was in extreme pain and began to have troube breathing. I was within 10 minutes of death. Every nurses worst nightmare is being taken care of by her coworkers. I woke up in the ICU on a ventilator with my coworkers at my side. I was diagnosed with Lupus, SJS. The ER doc said two things that I will never forget. He said I think this is a severe case of SJS, but I have never really seen one, and you will probably get a lot worse before you start to get better. Then he hesitated and said, IF you get better, because there are two kinds of people with SJS....those who die and those who wish they had. Three months in the hospital and then I went home on special IV nutrition. I could only walk about 10 feet and weighed 81 pounds. My husband gave our children to a friend to take care of and only saw them about once a week. My oldest daughter spent her 5th birthday there without her mother or father, and by the time I was able to go home, my youngest daughter did not know who I was. She would not come to me and cried if I tried to hug her. My apearance scared her! I went back to work after 4 months. I have had 9 eye surgeries, am legally blind in my right eye, still have GI problems and kidney problems. I later had 7 jaw/facial surgeries to repair damage from the JRA. I had to quit working 5 years ago and go on social security disability. All of this has taken a toll on my family. Needless to say, I am now divorced. He cheated on me last year (I believe it was the second time). The divorce rate jumps to 90% when one spouse becomes chronically ill. My children have had a difficult time dealing with everything. My youngest daughter blames me for the divorce. She is living with her father and currently is not speaking to me. I will soon loose my drivers license, and now that the divorce is final, I need to find another place to live that I can aford on SSI. SJS has destroyed my health, career, marriage, and who knows what else! I have given up on counceling at my church, esp


ecially since my ex sits in the same church and has no remorse. I need to find a support group or psychologist who understands chronic illness. I am battling depression as well as the chronic pain, sjogrens syndrome, fibromyalgia, menopause, glaucoma, joint damage, Lupus, etc. etc. Since the divorce this year, I feel like my life is meaningless. I need lots of friends who can understand, and lots of hope.
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ID: 100020 Time/Date: 01:35:58 PM PDT/ 06-28-2009
Name: Michael Wilmoth
Email Address: mikewilmoth@comcast.net
Story: I was diagnosised with SJS in 1968 just before my first birthday. I really should get my Mom to share my story. I do know that it started with a rash on my stomach that in a matter of 24 hours coverd my entire body and manifested into a blister. When I first arrived at Baptist Hospital in Winston-Salem, NC they told my parents I would not live through the night. At it's worst, my face was so swollen that no facial features were distinguishable.

As my condition improved, they first told my parents I would be brain dead after having such a high fever for so long.

After some brain activity was detected, they said I would suffer from sever mental retardation.

They also told my parents I would be blind, and probably deaf and dumb.

I have only seen photos of me after returning home, with my hands and feet wrapped and Mom said everything had to be sterile.

Today at 41, I have no significant problems relating to my illness. I am an attorney, who owns a company working to help the unisured gain access to medical care.
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ID: 100019 Time/Date: 01:35:04 PM PDT/ 06-28-2009
Name: Gina
Email Address: ginaskrap1@yahoo.com
Story: Hello, My daughter Brianna went to the hospital on 04/04/2009 and I was told she had a allergic reaction to something. We got released. That night she just got orse like she was on fire and mouth started to peel. I took her back and said we were in here earlier and they needed to do something about it. Goos Sam addmitted her and they could not figure it out. Got stransferred to another hospital they said Steven Johnsons Diease. They a doctor looked at her and sent us to another hospital to the Burn unit were thet diagnosed her with the TENS. It was a rough road. If anyone needs to talk or any questions that I can help. I think that this is horrible from Childrens Tylenol.
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ID: 100018 Time/Date: 01:34:15 PM PDT/ 06-28-2009
Name: David P Cresap
Email Address: dpaserc@suddenlink.net
Story: I am a 56 year old male and have been an Alternative Medical Specialist as a Human Body Mechanic for 18 years.
On April 4th 2009 I injured my left foot and was given Keflex to control any infection as a result of the injury. After almost a week it was apparent that the medication wasn't working well since there was redness, slight swelling, and a few red dots near the injury.
On April 10th I returned to the ER to have it checked and possibly have the medication changed. At this time I had a white blood cell count of 8000 which indicated an increase in infection.
They chose to admit me to the hospital to enable better management of the infection. That night I was give Ampicillin Sulfactin in an IV. In the morning I awoke to find my skin was a peachy pink/red color and covered over 95% with large red blotches with purple highlights. It also included internally, my mouth and esophegous down to my stomach. The only areas unaffected were the backs of both hands, my face and my right foot.
Neither the attending doctor nor orthopedic consultant for my foot had ever seen such a reaction. On Saturday afternoon a specialist was called in and he took out the IV and I was given a small injection of benedril. I was unable to eat or drink and was projectile vomiting because of the stomach upset, extreme pain involved with swallowing and occasionally speaking initiated my gag reflex. (The swallowing pain continued until Tuesday evening.) The vomiting stopped Sunday.
Sunday morning after my visits with the doctors who appeared to be clueless as to what to do, I realized I needed to take control and do what I knew to do. By this time my nurses referred to me as "The Leopard Man".
I was in no pain except for swallowing, and realizing my condition was my body's swelling (inflamatory) response to the chemical (antibiotic medication) ampicillin sulfactin. I asked my wife to bring me "pure citrus bioflavinoid" (containing no Rutin or Hesperidin) and I started taking 5000mg 3 times a day or 15000mg per day Sunday, Monday and Tuesday. This was a real challenge because of the painful difficulty swallowing. Citrus Bioflavinoid is a NATURAL anti-inflamatory which is safe and water soluble which means one cannot overdose as the body will excrete in the urine any excess. I have been using this Citrus Bioflavinoid in my practice for many years with great success for swelling conditions resulting from athletic or accident trama.
Sunday night I was given a second small dose injection of benedril which did not seem to have any effect. I had white blood cell count of 19000 and a temperature of 103.4
Monday I continued with the megadosing of the Bioflavinoid, was feeling better and by that evening I was seeing my body response to the treatment.
Tuesday morning the blotching was fading, the swelling was going away, my white cell count was normal so the doctor was going to release me, but because I still could not swallow, she decided to keep me for one more day and have a gastro-interologist come see me. (He did not show.) I was able to eat something Tuesday night.
Wednesday (April 15th) I was released as I had no more swelling, the blotches were faded. I was weak from my ordeal however, I assume from no food or water by mouth for 4 days. (only 2 liters of IV fluids per day ie; 5% dextrose with potasium) I was able to eat and drink Wednesday with only a little discomfort.
Today (April 30th) I continue with the Bioflavinoids and since my release from the hospital, have added Golden Seal Root (A natural Anti-biotic). I have no swelling, no infection, am healing nicely and my energy is returning.
The one side effect now, is that I am sloughing my skin as though I had a massive sunburn and it itches.
Overall, it was an interesting experience. It is a little concerning that the allopathic medical community is unprepared to recognize and treat Steven-Johnson Syndrome expediciously. My experience was that the SJS lasted 4 days with no negative side effects. Further, it has been my experience that when there is a chemical challenge to the body that maybe commercial chemicals are not the best treatment modality, because they can add more conflict. In my case it appeared to be the use of natural elements that the body could easily recognize that provided the answers, and a positive outcome.
If I can help, I am willing to answer any questions regarding my experience.

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ID: 100017 Time/Date: 01:33:15 PM PDT/ 06-28-2009
Name: Kristina Smith
Email Address: fearmeimagoober@yahoo.com
Story: I was diagnosed with breast cancer when I was 25 years old. My chemo ended up giving me SJS. I had red blotches from head to toe and my genitals were severly swollen and raw inside and out. My doctors never formally diagnosed me with SJS but we know that's what it was. I still get mild occorances from it, I'm dealing with one right now. I would like to know why it comes out mildly when it feels like it and if it will ever go away. I dont really have anyone to ask these questions to. Thanks.
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ID: 100016 Time/Date: 01:31:32 PM PDT/ 06-28-2009
Name: julieta e quiban
Email Address: EmailAddress@notprovided.com
Story: Hi. I'm Juliet Quiban, 48 yrs old, from Philippines and hopefully a survivor of SJS because I was hospitalzed last April 19 2009 and went home April 24, 2009 and right now stll undergoing steroids medication which will end on May 18, 2009. I had a very close call and were if not for my very good doctor Jerry Castro and Dr Garcia I don't know where will I be today. I had lesions and blisters all over my face and my whole body front and back. My arms and forearms were also full of lesions and blisters and my neck and my chest and thank God very minimal in the legs and feet. I had plenty of lesions and blisters also in my hair and ears and nose and inside my mouth. Up to now I still have blisters andcracks in my mouth but I can say I'm recovering remarkably. I hope that I can still say this thing in the near future but I intend to conquer my Steven Johnson Syndrome and I"m pretty sure I can make it. I had sulfa drugs for UTI and then Allupurinol for uric ang Zymbastatin for my cholesterol. Mine is very adverse reaction to drugs.
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ID: 100015 Time/Date: 01:30:34 PM PDT/ 06-28-2009
Name: Glyn Elrod
Email Address: EmailAddress@notprovided.com
Story: August 27, 1998:

Was in attic and fell through ceiling. First thing was that hit was my head on the kitchen table. Severe head injury, was put on CareFlight helicopter to Methodist Hospital in Dallas. After a few days, due to the swelling of the brain, they had to do surgery to remove the frontal and temporal lobes.

After 10 day coma, I began recovery. Soon though, I got to feeling worse; sore throat and was cold all the time. Eventually I started breaking out in a rash all over body, and all fingernails and toenails came off. Was in a great deal of pain; so much so I asked an associate pastor from my church to pray for my death.

Eventually they figured out I had SJS. It was caused because, unbeknownst to all, that I was allergic to Dilantin.
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ID: 100014 Time/Date: 01:29:13 PM PDT/ 06-28-2009
Name: linda harcourt smith
Email Address: lavendergrove@yahoo.co.uk
Story: hi there
this is a very short story . I have a son who has had reoccurring SJS over the last 17 years he will be 18 this year.
He has been admitted into hospital 23times from either Ereythema Multiforme severe or SJS.

He is at college presently and would achieved this year 13GCSES he is a bright healthy young man who is a credit to me and to his peers.

I would just like people to read this and see there are not only survivors of SJS but can lead a normal life.

Thanku
Linda and Ian
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ID: 100013 Time/Date: 12:55:55 PM PDT/ 06-26-2009
Name: TIKEENIA CAMPBELL-WHITE
Email Address: KEENY333@YAHOO.COM
Story: Hi my name is Tikeenia Campbell-White. I was initially diagnosed with SJS in 1992. Since then I have been struck by this illness in 2005, and again in 2007. My reactions came from E-mycin, Augmention, and Sulfur drugs. Although I am doing much better and most of my scars are gone, I still suffer from terrible symptoms of SJS and side effects from my medication. I get overheated very easily because some of my pores are scared shut, I often have dry eyes and mouth, and what bothers me the most is severe joint pain and reoccurring blisters. I have learned however, I am a survivor! I am very excited to find out that there are so many others who are just like me. Together we can bring more awareness to this illness. Others need to know SJS/TEN can happen to anyone at anytime. Although there are ways to cope and live with SJS there is not a cure yet.With God's gift of healing and a mission to live, we can live our best life now.
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ID: 100012 Time/Date: 12:54:53 PM PDT/ 06-26-2009
Name: Rossouw Scharneck
Email Address: marinda@tcbpublishing.co.za
Story: My son is 4 years old, and was diagnosed with SJS in February 2009. He was on Augmentin ES 600 for a lung infection. 2 and a half weeks after taking Augmentin, he started with SJS symptoms. We took him to a pediatrician that knew about SJS, but unfortunately the Dr did not think that it was a serious condition. After weeks of phoning and looking for a Dr in South Africa that are familiar with SJS, we took him to another Pediatrician that thought SJS is a very serious syndrome. He told us how to treat my son and what to look out for. He also told us that he is not allowed to take any medication again, just Paracetamol syrup if he gets sick. He had 3rd degree burn wounds on his head, and on his legs. The wounds on his legs heald quickly, but the wounds on his head took about 3 months to go away. We took him for an ECG and to an opthamologist, ENT and to the Ear institute. We have been watching him like a hawk these last few months, so scared that something is going to happen again. He has had no after effects of SJS as yet. We know how lucky we are, it could have been so much worse.
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