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Resumes       links to Stevens-Johnson syndrome support groups

1. Elisabeth 47. Sick first time when she was twenty. The cause was an antipsychotic drug named Trilafon -low dose to treat a depression. Bullous erythema multiforme spread over the body, most on her hands. Was already in hospital when this happened. No burn-unit. Healed fine. Small EM-onsets maybe once a year. The last one after taking benzocaine (over the counter -numb sore throats) After that (permanent?) eyeproblems.
 

2. Lena 46. Sick first time when 12. The cause was pneumonia. Relaps twice. Caused by acid salicylate (at age 16) and herring (age 18). SJS with bullous at the skin, on the mucous membranes all over the body and infected eyes with bullous there as well. Treated at childrens hospital with corticosteroids, last time treated with immunoglobuline. No burn unit. Skin healed in 2 years. Partly adherenced lips. Now steady. No big eyeproblems, shingles as a recurring nuisanse, subacute thyreoritis. Weightproblems if regular use of alcohol implements minor damage on the liver.


3. Female 30+. At 14 allergic to penicillin -fingers and lips swell. Avoided antibiotics till 30. New allergic reaction towards drugs. Hospitalized for care for earinfection. After 10 days of mediaction with Ciproxin SJS/TEN. Burning, iching and stinging. Burning eyes, bleeding nose and mouth. All mucous membrane peeled off from nose, mouth and abdomen. No doctor could diagnose SJS/TEN for days. After skinlabs reliefe and diagnose. Morfine for killing the pain and high doses of corticosteroids. Panic reactions and scared of new onset. Today ok. Still problems with the eyes (dryness).


4. Boy 3 years old, got SJS because of the poliovaccine. The boy was hospitalized for 6 weeks, and in respirator. He got lifelong injuries on his teeth, lungs and eyes. His mother hasn’t heard about anyone else i Denmark with EM/SJS/TEN. The doctors knew even less. Her son was taken to Germany for help. Mother recommends the TENS-group for support and once again warns about adherences, eyeproblems etc as post SJS-traumas. Lowered tearproduction, blindness, pain, and eyelids that turn inside.


5. Little girl Julie -11 months old. After 2 epileptic seizures doctor prescribed 45 mg of phenobarbital. Mother asked about sideeffects of the medication and was told "drowsiness". 2 weeks later on this medication little Julies eyes swelled shut and she developed blisters across her body, inside her mouth and genital area. Also ran a high fever. Mother took her to hospital where they misdiagnosed her with the chicken pox and immediately started an IV administering phenobarbital. After 4 days and nearly dying she was properly diagnosed and the phenobarbital was discontinued. Julies body was 80% covered with burns. 26 days in isolation and burn unit with feeding tube. Suffered a great deal of damage to her eyes, blind in her right eye low vision in her left. Dry eye syndrome and photophobia. Scarring inside of her ears causing her hearing to diminish. Swallow disorder and hyperpigmentation scars in her face. Julies mother Jean started in 1995 the first SJS Support group, and 1996 the Stevens Johnson Syndrome Foundation (Julie Foundation for allergic drug reactions) was formed in the United States
(http://www.sjsupport.org/)

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More about Julie http://www.sjsupport.org/julie.shtml


6. 50 years old female with flu like symptoms. On the fourth day developed itchy eyes and rash. Went to the local 24 hour care doctor and he misdiagnosed her. On the sixth day the rash was starting to blister and she could barely open her eyes. Off to the hospital emergency room and admitted to hospital. Put on intervenous antibiotics and fluids. Her skin blistered from head to toe and all kinds of tests were done. Stayed there for five days. Went to her opthamologist on the fifteenth day of the disease. He took one look at her and said "I think you have Stevens Johnson Syndrome”. Destroyed tear ducts and extremely dry eyes gives her pain constantly now. They have not determined what caused the SJS. They are assuming it was due to a virus.

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7. 42 years old female. Became sick with SJS March 2001. The case was a seizure medication called Lamictal. Several adverse symptoms. No other family or friends have contracted SJS that she is aware of. She was in a hospital burn unit for 4 weeks. No another occurence of Steven's Johnson's Syndrome. Eyelid damage and decreased tear production. Also had a corneal ulcer shortly after being released from the hospital. She have been to Dr. Tseng in Miami and have had all 4 tear ducts cauterized. She has constant daily struggle to keep her eyes comfortable due to the dryness and pain from the scar tissue. She also wear bandage contact lenses now. "My eyes are damaged forever and this is still a very hard thing to accept".


8. message: I am now 28 year old female. 16 years ago when I was 12 I had SJS. The cause was Tegretal. I was hospitalized for over a month with mostly 3rd degree burns on most of my body. For about 8 years I was left legally blind and severly light sensitive. It hurt to even leave a dark room. I saw Dr. Pflugfelder at Bascom Palmer who started me on cyclosporin. That saved my sight. Now at the age of 28 I still have corneal problems. I see an eye doctor weekly to get my eye lashes epilated and lids scrapped. I use a bunch of eye drops daily ( Alrex, doxyclone, blood serum, vitamin A and refresh plus. I also wear proclear and ciba night and day contact lenses. I have skin that grows over my right ear drum. The skin is removed every 2 to 3 months. I have had most of my teeth decay. SJS is a life altering and changing experience. It has not only effected my life but my entire family. I have been real lucky to have my family support me. I strongly believe everything happens for a reason. I now own and direct a school for deaf children. A career path I would not have chosen if I did not get SJS. I have my drivers license and on most days I can see well enough to drive .


9. message: My Daughter aged 38 with SJS, NOT caused by medication so it must have been a virus. First woke up with swollen eyes and lips, went to emergency hospital and was there most of the day going from skin dept to eyes etc. and then spots started to come out over the whole body and was sent home saying it was chicken pox, that was on a Monday, then steadily got worse called the doctor on the Wednesday and again on Thursday when they rushed her into hospital sirens going, and she nearly died and was in intensive care for 3 weeks. I had EM when I was a teenager sao do not know if there is a connection. She has permanent eye damage and will never drive a car again. Very very sad. Mum from London U.K.


10. message: I am a female, 50 years old. I have been dianosed with sulfa/sulfate allergy since I was 17 years old. I am a Bipolar (mental)person and took many medicines to stablize my mood swings, one drug for bipolar disorder of which a doctor gave me in late 2002 contained sulfa. I had a "rash", a buggie/crawling under the skin feeling, I was sick to my stomach. The horrible rash places burst, the skin peeled and then made ulcers/ugly raw! The doctor finally decided to take me off the bipolar drug: Topamax- after 1 month. Slowly the rash abated and healed. From this point on I was becoming chemical sensitive and headed for a downward spiral, the end wouldn't be pleasant: SJS. Four more bouts of Erythema Multiforme happened on different drugs between 2002and 2004-June was the worse bout ever of EM/, I was so sick --frequent visits to a local hospital/several doctors and not one (in our town) knew what EM/SJS/TENS was. I was on the heart floor 3 times with heart palputations, my lungs were peeling-confirmed COPD (chronic obsturctive pulmonary Disease) 0-Digestion, hypertension, migrane headaches, ulcers in cervic/ears/ sinises/mouth & throat-throat had to be opened through surgery in October of 2004, my joints ached, chronic fatigue syndrome, my kidneys/liver were not working properly, many problems besides HUGE target lesions were appearing by November 2004. As these burst, the skin on my body peel off-left ! strange places, later scars. Another doctor put me on Lithuim/ I was taking water pills (lasix) at the same time which in my weakened state already (immune system damaged) I went toxic. December 9, My blood tests came to the medical doctors office and they called me, told me to go straight to the emergency room that I had lithuim toxicticty. The ER put me on the heart floor "again" but this time the heart doctor assigned to my case told me to stop all drugs except: my headache pills/lasix/potassuim pills, take nothing else and said I should go into mental hospital to detox or I would probley have seizures....I detoxed alone, at home, yes I had seizures and it was very hard but I made it...clean of all chemical drugs. IT is now December 28,2004, I saw an elderly doctor that saw the fresh scars/some active (but healing) places on my body and said "Do you know what sjs is? no? Stevens Johnson Syndrome? Go to the library and look it up..." I went and looked, there were pict! ures of exactly what had happened to me, EM/SJS, the rash was! in a me dical book! But there was so little information...and not one medical doctor/Emergency Room doctor/ nurse/ psychiatrist/NO-ONE!!!! Knew what was wrong with me, I pray that no-one else ever has to go through this alone again. I am now multiple chemical sensitive--I have to read labels and be ever so careful now of anything I take (medicines). Thank you for reading this story and thank you for allowing me to write it on your site. Bless you, Imogene -USA.