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name: Jean McCawley

message: I had never heard of Stevens Johnson Syndrome until my infant daughter Julie was unfortunate to be diagnosed with it. That was the day that our lives were changed forever. Julie was 11 months old. She had 2 seizures and the doctors told me that was a diagnosis of pediatric epilepsy. They prescribed 45 mg of phenobarbital. I questioned the doctors and asked what were the sideeffects of this medication. I was told drowsiness. Exactly 2 weeks later to the day her eyes swelled shut and she developed blisters across her body, inside her mouth and genital area. She also ran a high fever. I took her to the hospital where they misdiagnosed her with the chicken pox and immediately started an IV administering phenobarbital. After 4 days and nearly dying a nurse properly diagnosed her and the phenobarbital was discontinued. Julie was covered with burns over 80% of her body. She spent 26 days in isolation and the burn unit. She was released on a feeding tube and I contin! ued to care for her at home for 4 more months. She suffered a great deal of damage to her eyes. She is blind in her right eye and has low vision in her left that fluctuates. She also has dry eye syndrome and photophobia, scarring inside of her ears causing her hearing to diminish. She has scarring inside her throat causing a swallow disorder. Her face has hyperpigmentation scars. She is the sweetest little girl I know. She has a loving and compassionate heart and never feels sorry for herself. She is the light of my life. In 1995 we started the first SJS Support Group and in 1996 the Stevens Johnson Syndrome Foundation was formed in the United States. We have had the pleasure of speaking with thousands of people around the world. We know now that SJS is not rare. We are so thankful to Elisabeth for starting her group in Sweden and Finland. She is a godsend. We continue to keep all of you in our prayers. With warmest regards, Jean McCawley

message: Hi, I am a 50 year old white female living in the state of Maryland in the United States. I was stricken with SJS on November 2, 2005. My first symtoms were flu like, mild fever, chills, and body aches. This lasted for 3 days. I did not take any pain medication. On the fourth day I developed itchy eyes and a rash. I went to the local 24 hour care doctor and he diagnosed a food allergy (even though I hadn't eaten anything unusual). He gave me an injection of steroids and a prescription for more as well as a script for antihistmine. I went home and the next day was much worse. On the sixth day the rash was starting to blister and I could barely open my eyes so off to the hospital emergency room I went. When I arrived there I was badly dehyrated, very jaundiced, extremley sensitive to light, and my eyes hurt very bad. All the doctors and nurses were purplexed but the main doctor was sure it was from a tick disease, either erliciosis or rocky mountain spott! ed fever. I was admitted to the hospital and put on intervenous antibiotics and fluids. I stayed there for five days. My skin blistered from head to toe and all kinds of tests were done. Nothing proved positive. They kept asking what hurt the worst. "My eyes, my eyes!" I repeated over and over again. They never did send in a opthamologist but did call one who said "Oh, that doesn't sound too bad, just give her some antibiotic creme for her eyes." My strength seemed to improve and my fever went down, so they let me go home. I went to my opthamologist on the fifteenth day of the disease. He took one look at me and said "I think you have Stevens Johnson Syndrome." That was the first time my husband and I had ever heard the words. He sent me immediatly to a dermatologist who did a biopsy which did in fact confirm the diagnosis. Today i feel stonger. My liver ensymes are almost back to normal, my rash is fading, but I have destroyed tear ducts and extremely dry eyes which give me pain constantly. I have been on Restasis for a month now and am praying it will help. They tell me it takes two to four months to work. They have not determined what caused the SJS. I did not take any drugs or do anything different in my life. They are assuming it was due to a virus, but since I was misdiagnosed in the hospital not enough tests were done to tell what it was. I am still in a state of shock that this happened to me. I lead a healty lifestyle, am rarely sick, and very active. Now I'm dependent on others because of the problems with my eyes. I'm am a very private person but am writing this in the hopes it may help even one person who develops this horrible condition to be diagnosed readily and helped. Thank you for your commitment.