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ID: 100032 Time/Date: 01:50:57 PM PDT/ 06-28-2009
Name: Anna
Email Address: amabate@msn.com
Story: Hello,
My name is Anna, and I was diagnosed with Stevens Johnson Syndome. I am 11 years old, and I have recurrent SJS. This is the sixth time that I have had SJS. For the first three episodes I was sent home by doctors who said that it was viral, and not to worry about it. The fourth episode I was admitted to Akron Childrens Hospital. Basicly, I was only at the hospital for dehydration. There was not a treatment, nor a route that the doctors could take to help me to get better. I spent five days there, and went home with no further answers.
On the fifth episode, I took steriods and they really didn't do much, but they kept the inflammation in my mouth down.
On the sixth episode, I was admitted to Pittsburgh Childrens Hospital, to get a IVIG treatment. IVIG transfusion goes in through an IV and coates the good cells to basicly give them a protection layer. For me, the treatment did not work at all, and after 4 days in the hospital I was sent home. I am currently recovering, and doctors are pretty much positive that I will get SJS again.
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ID: 100031 Time/Date: 01:50:09 PM PDT/ 06-28-2009
Name: DEISE DARC
Email Address: d-arc@uol.com.br
Story: I'M AFRAID TO DIE SOMEDAY, BECAUSE HERE IN BRAZIL , THERE ARE NO PROFESSIONALS THAT KNOWS HOW TO CARE OF SJS. I HAD THIS TWICE. FIRST TIME I WENT TO TEN DIFFERENT DOCTORS AND NO ONE GIVE ME ANY MEDICATION. ONE ASK ME TO DO A HIV EXAME, AND DON'T WANT TO SHAKE MY HAND TO SAY GOODBYE. LAST TIME I HAD WAS LAST YEAR. I TOLD MY DOCTOR THAT IT WAS SJS, BUT HE SEND ME TO A GYNNECOLOGIST AND SAID MY PROBLEM IS CANDID. I LIVE NEAR OF SAO PAULO, WHERE THE BEST DOCTORS ARE, BUT NOBODY KNOWS HOW TO TREAT THIS. MY SISTER HAD SJS THREE TIMES. IF SOMEBODY KNOWS A DOCTOR THAT KNOWS HOW TO CARE SJS, PLEASE CONTACT ME. ONLY WHO FELL THE PAIN OF BE FRIED ALIVE WILL UNDERSTAND MY FEAR.
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ID: 100030 Time/Date: 01:48:15 PM PDT/ 06-28-2009
Name: PRASHANT ATRE
Email Address: atreprashant@yahoo.com
Story: My 7 years daughter was recently affect the reaction of SJS, Story is like follows, 16 March 2009 she was got fever it was sunday. Next day on 17th we have consult our doctor and given her SEPTRON. At evening she get affeted by the rash and some burn spots. We have again contected to our doctor, they come into couclusion on that my daughter has got reaction of SJS. Due to we have get noticed it in time and our doctor given quick treatment, her SJS reaction is get in to control. But to control the reaction doctor given hre the mild doses of the steroids. So she get some weekness. But according to doctor she will come back normal within in month.

My doctor suggested to surf this site to know the SJS. I shocked to seen about the SJS.

THANK GOD you saved my daughter from hevy attact of SJS.
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ID: 100029 Time/Date: 01:45:50 PM PDT/ 06-28-2009
Name: Tom
Email Address: tabatecpa@hotmail.com
Story: My 11 year old daughter has had 6 episodes of Stevens Johnson Syndrome which we believe is casued by Mycoplasma bacteria. We have not been able to find a doctor who is willing to really research her condition and try to find an effective solution or treatment. As a result she has had to suffer through these episodes and has been hospitalized on two occasions. If there is anyone who is aware of an effective treatment option or a doctor who is interested in a child with recurrent Stevens Johnson please send an email as we are desperate for a solution.
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ID: 100028 Time/Date: 01:45:04 PM PDT/ 06-28-2009
Name: Teresa Pittman
Email Address: jazzyjaquez@yahoo.com
Story: My story begins in December 2004. I worked sick all week at the end of the day I would come home take a bath and take ibuprofen because my head had been hurting, I assumed I was coming down with a cold. This went on until Friday December 23,2004. I called my mom to take me to the emergency room because I could't see and I was exausted.
They gave me some potassium pills I couldn't swallow them. I went home not knowing what was wrong. The next day was Christmas the worst by then I was so weak, I couldn't brush my teeh my mouth was soar. I just layed in the bed for 2 days my mother and my husband took me to the doctors office and I tod him if I go back home Im going to die please put me in the hospital. He did I was admitted to an isolation room. The next morning a team of doctors gathered in my room asking me all kinds of questions. By now my left eye was swollen shut and I couldn't talk. They testedme for everything under the sun. TB, Aids and Lupus. My teperature was so high my lips were scarred. The doctor put me on Valtrex for herpes because of lesions in my mouth. My eyes were oozing thick pus. blood was taken from me every 4 hours for a week.I had enough. The eye doctor came in every afternoon to scrape my eyes with a metal instrument agonizing pain I have ever felt. I was dismissed without knowing what was wrong. I continued to go to the eye doctor by know I was just about blind(I was a nursing student there goes my career)A specilalist was called in from Atlanta , he ask me if I evr heard of SJS I immediately came home and looked it up finally I knew what was going on every symptom every thing I had gone through was staring at me on my computer screen. I suffer today with my eyes the are much weaker than they used to be. I couldn't drive at night for 3 years and really didn't want to drive out of town I rarely did. 5 Years later and I still feel and see the reprucussions of this syndrome by looking in the mirror everyday. My lips and my eyes show me everyday of that terrible episode in my life. I thank God my family took me to the doctors office that day I truly believe I would have died and my family not knowing what was going on.
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ID: 100027 Time/Date: 01:43:54 PM PDT/ 06-28-2009
Name: Donna Szatkowski
Email Address: donna.szatkowski@gmail.com
Story: Hi, my name is Donna and here is my story. I was recently put on Lamictal (generic form) and was told that there was a slight possibility that I may develop a skin rash due to this drug. My psych. had said, "If this does occur, head directly to the ER room", which I did. I was put on Lamictal (generic) on 3/1/09 at a dose of 25 mg to be titrated by 25mg every 20 days. On _______, I was up to a 75mg dose and was so very itchy. I thought nothing of this until I went to take a shower that evening and almost fainted at my reflection in the mirror. I was heavily marked with silver-dollar size burn marks on my upper torso, lower torso and back. In addition, I had huge boils/lesions on my arms and back as well. My lips began to swell and my ears reddened, a short time afterwards my face looked as if I was just in the sun all day w/out wearing sunblock. I immediately dialed 911 and was taken to the ER room (Elmhurst, NY). I told the EMT people that my psych had said if I developed a rash to go to the ER immediately. I gave all my information to the EMT as well as the nurse at the hospital. I got a a quick visual from the doctor in ER, he only looked at my chest and I was given a shot of benedryl and a tablet of pretizone and was told to wait on the side to see if I felt any other symptons. After a 1/2 hour, I asked someone if I could leave, they said yes, w/out giving me any after care or release papers!!! ER these days!! -- I tell you, not good. I went home and was unable to sleep due to the feeling as if I were on fire, the itching, the welts, the boils, the ringing in my ears. I went to my GP the next day and the nurse who took my intake just so happen to be involved in a study of Lamictal users. She made my GP aware of the drug and when he came in to see me was quite concerned. He explained SJS and said if, I had developed one more lesion or had no relief by end of day that I should go to the ER once again. He took blood and urine samples and gave me a shot of benedryl and an 80% shot of an

it-inflammatory medicine in my right arm. He also told me that if I did go back to the ER to have the doctor look up Lamicatal in the PRM (Physicians reference manual). Needless to say, I had no relief the next day, went back to another ER (NY Hospital/NYC). I told the doctor about the PRM, she shook her head, said it wasn't SJS?? and gave me 25mg of benedryl and 50 mg of pretizone (the same thing the previous ER doctor gave me). This time, my symptons subsided some-- my itichiness subsided and my burning feeling somewhat subsided as well. I was so happy, finally--- to be put out of misery after 3 days. She gave me 2 pills of pretizone (one for the next 2 days) and benedryl and told me that I would be all cleared up by Friday. When I returned home, I was finally at ease... after roughly 6 hours past my ER visit. my symptons came back fierecly, the boils errupted again, the itichiness, the burning and now my ears were hurting terribly, inside as well as outside. I cried my eyes out. The next day I had my therapy appt. and my therapist suggested that maybe I NOT go on vacation, as I had planned to go to Arizona on Saturday. I was real upset and called my psych, who Finally decided t see me. We were scheduled to meet at 4pm.. but I didn't wind up seeing him until 5:45pm. all the time thinking I was going to die, I actualy thought about writing a will, I never felt this way in my entire life. When I saw him he said it wasn't SJS. He put me on Hydroxyzine Pamoate 50mg and told me that he didn't know when my lesions would clear up and that I could indeed go on vacation. Sunday-- (a full week after my initial outbreak-- my skin lesions did clear up some) but my face is inflamed and now my joints hurt so terribly. I did and still do have SJS. I am outraged that no-one other than my GP recognized this. What is the problem?? SJS has to be more conveyed and Physicians need to be made aware of this terrible thing. I sit hear in tears, inflamed and in pain. I will file a claim w/the FDA as well as with G

SK, the manufacturer of the drug. MY nightmare continues. If I may be of any help to any1 going through a similar situation, I am here for you and will try to help.
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ID: 100026 Time/Date: 01:42:19 PM PDT/ 06-28-2009
Name: margaret
Email Address: margaret_mccreadie@yahoo.co.uk
Story: what a great job you are doing with this web site my family hadnt heard of sjs before yesterday, when my 14yr old nephew was diagnosed with it he had severe blisters in his mouth for 3 weeks which the doctor put down to thrush and gave him nizstan and ibrufen, it was only when we persisted that someone took a swab that we were told of the horror of what he has i say horror because its such a nasty and sometimes fatal disease. he is in hospital getting treated and since yesterday is looking better than he has in weeks. i salute you in running this website as it is great information to people like us who have never heard of this disease and we greatly appreciate the information that you provide. bravo to you all and god bless.
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ID: 100025 Time/Date: 01:41:16 PM PDT/ 06-28-2009
Name: Jenny Brown
Email Address: jchocolates@gmail.com
Story: I became sick with stevens johnson syndrome in mid January. Spent two weeks in the hospital. I was very scared and thought I was dieing. It is now March 19th and this was my first week back to work since getting sick. I see doctors almost every week but I still suffer from some scarring, severe eye pain, dry burning eyes. Extreme light sensitivity. I wear a baseball cap and sunglasses most of the time, but the healing process has taken so long. I spent months at home recovering and it resulted in some depression. I am so frustrated about my recovery and dont know anyone who can relate to what I am going through. I am seeking out others who have this illness and maybe we can share experiences and offer support, information, and advice. I dont check email very often because the computer hurts my eyes, but please write to me if you can share your hardships and offer support.
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ID: 100024 Time/Date: 01:40:29 PM PDT/ 06-28-2009
Name: Barbara Coffey
Email Address: barbaracoffey5@gmail.com
Story: My nephew who lives with me and is 36 got SJS nine months ago following surgery to remove tumors in his cheek. This was the second operation and there was a chance he could loose his facial muscle. Instead he had a reaction to one of three drugs. The doctor wnated to do radiation right away but because of the SJS that didnt happen. Now the doctor wants to do the radiation as soon as possible since another tumor has grown. If the radiation doesnt work then he will have surgery and definitely loose all muscle control on the left side of his face. My concerns are many. I am afraid that the radiation which needs to be a high level dose over six to eight weeks might bring back symptoms of SJS. Ihave been on this sight and emailed a doctor at John Hopkins but not received any help. Does anyone know of a doctor in NYC or elsewhere who has some expertise with radiation and SJS. All help would be greatfully accepted.
Thanks so much
Barbara
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ID: 100023 Time/Date: 01:39:56 PM PDT/ 06-28-2009
Name: Karen Callaghan
Email Address: EmailAddress@notprovided.com
Story: I took Diflucan One tablet and began to have reactions straight away. I had tingling in my mouth and my lips blew up to about 6 times their size. After when they began to deflate my lips became blistered and the inside of my mouth ulcerated. I am in extreme pain and 5 days after having this I went to the doctor and was told that I had SJS. I couldn't believe that taking something over the counter could cause such a horrible side effect.

Anyone who is debating taking Diflucan One and has this problem, please don't.
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