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ID: 100089 Time/Date: 01:37:08 PM PDT/ 05-17-2010
Name: Paul Kennedy
Email Address:
Story: I have been diagnosed as Bi-Polar for the better part of 10 years. Last year, I hit a particularly low spot in my life in which I became suicidal. In an attempt to protect myself from myself, I checked myself into a psychiatric clinic. During the course of my stay, the psychiatrist on staff changed my medication and put me on Tegratol and Lithium. I am of Asian decent but I was never made aware of the FDA Black Box warning. Four days after I was checked out, I ended up in the emergency room for what looked like a severe case of pink eye. On admission, I had a temperature of 106.5. Within 2 days, I was finally moved to the ParkLand Burn Unit in Dallas, Texas where it was determined that I had SJS. My SJS progressed to TENS with 42% of my body inside and out having been affected. I stayed in the Burn ICU for 2 and 1/2 weeks with my family by my side. I was able to return to work 1 month after the onset of the disease.

I originally had severe dry eye, a significant loss of taste, sever sensitivity to heat and cold, as well as sever itching. Taste has returned to almost normal as well as a higher tolerance to heat and cold. I have a permanent ulceration on my right eye which causes me double vision. I developed scars on my skin due to all of the itching and I still have pigmentation spots.
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ID: 100088 Time/Date: 07:07:00 AM PDT/ 05-08-2010
Name: Joanne Palmer
Email Address:
Story: I am a 48 year old woman and was just recently released from the hospital where I was diagnoised and treated with this
horrible condition. Until 2 weeks ago I had not even heard of
sjs. Needless to say it is now a very common topic with my family. I truly thought I was dying when I went to the Emergency Room on April 23rd, 2010. I have two types of skin conditions, Psoriasis and Vitaligo. I was in pain for over a
month and thought I was just having a terrible flare up with my known skin conditions. To my surprise I woke up on that morning so swollen that my eyes were swollen shut and I felt like I was on fire from head to toe. I was in so much pain and my skin was falling off everywhere. I thought my eye where going to burn out of my head. My husband had to nearly carry me to the car. When arriving at the hospital I had never seen doctors and nurses move so quickly. They at first told me I would be going to the Atlanta Burn Unit in Atlanta Georgia, but shortly my regular Doctor decided to keep my at that hospital until they could figure out what was going on. He called a Specialist in to see me and that was when I first found out that I had such a horrible medical condition and that it was no easy solution to fix. My immune system shut down, I had no Iron or Calcium. I had spots on my lungs that later turned into pnemonia. My hair was falling out everywhere and my skin falling off everywhere. My asophicus was infected and swollen to where I couldn't swallow. I was so swollen that my family members could hardly reconize me. I have had medical problems in my life, too many. But nothing ever like this. For the first 5 days I really thought I was going to die, and a few times even thought It would be okay if I were, cause the pain would go away. And not to mention the hurt and pain I saw in the faces of my husband and children. I don't completely understand this condition fully yet, but will grow to know it well. My family remains fearful and I can't stand to see their pain. But in time I suppose we will all learn to deal with it the best way we can. I still have many Doctors to see, including an Eye Doctor, for my eye sight is so blurry I can barely read or write. But for now I will remain hopeful and would gladly appreciate any and all information containing to the matter. My husband and one of my Daughters are constantly researching for any information they can find. I only have them to depend on and they have been great support through it all. I only wish they didn't have to worry with this at all. No Family should have to. I will do all that I can to raise awareness everywhere I go from here on out. Thanks for any information. The Doctors have said this was caused by and antibiotic I was taking in March 2010 but haven't given me the name of it yet. I find this appauling!

Joanne Palmer
3413 Ravenwood Drive
Lithia Springs, Ga. 30122
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ID: 100087 Time/Date: 01:20:53 AM PDT/ 05-02-2010
Name: kathryn lawton
Email Address:
Story: Hello, my name is Kathryn Lawton. On Martin Luther Kingís day in 2005 I fell off of my Mema's deck. The fall triggered me to have epileptic seizures. My doctor tried me on a few different medications and finally placed me on Carbatrol the spring of 2006. At the very beginning of summer I began to get red dots all over my body, I missed the last week of school because of it. When we went to a doctor they assumed (because I never had it before) that I had chicken pox. This was when I was 13 so it was rare but not unheard of. They put me on meds for it and for a while it was fine, but then right around my 14th birthday I started to get bumps up and down my arms. Once again we went to the doctor and they assumed it was poison ivy (which isnít uncommon where I live) so we waited for it to heal treating it with benedryl and washing it regularly, but it just got worse and worse until it covered my chest. My step father did some research and he thought it was eczema, but my mother wanted to take me to the doctors again anyway. I had an appointment to see my neurologist on the same day we were going to the doctors. My mother suggested that the medication I was on I mightíve been allergic to, but the doctor said it was impossible and REFUSED to take me off the medication, and after going back several times all he did was switch me to the sister medication; Tegratol. Big mistake, and of course the doctors couldnít figure it out. I began to get worse and worse.

Every summer I go on vacation to the Outer Banks with my father and his family and OBX is my favorite place in the world so after many arguments with my mom I convinced her to still allow me to go because at least then I would be in a place I was happy. Unfortunately my skin had gotten to the condition where I was completely miserable the whole time I was there. All of my skin all over my body had become red and puffy. It hurt to touch, to lie down, to eat, and sleep. It even hurt to breathe. Before my sickness I was 110lbs. At this point I was at 85lbs. One of the nights I had a fever of 105 and my stepmother and my nana forced me into a tub of cold water. It was like torture. I felt like I was being stabbed with thousands of knives. I screamed and cried, the neighbors probably thought they were trying to kill me. Finally they gave up and rushed me to the hospital. I hadnít eaten in days and I was dehydrated on top of that even though I was drinking water. The doctors placed an IV in me and ran some tests. They couldnít figure it out. But while I had the IV in I started to feel hungry again and they gave me food. They thought if I was eating after so long of not wanting anything to eat that this must be a sign that I was getting better. They gave me some lotions to help my skin and pain meds. Unfortunately as soon as I got back from the trip I started to get worse and worse. My skin started oozing proteins out of my pores. I couldnít eat. My eyes would swell shut over night and my skin began peeling.

One day my mother had set up an appointment with a dermatologist. It was still summer and I was sitting in the waiting room with my mom wearing a full blanket and sweats. I was so embarrassed. I felt the eyes of everyone on me. Finally the doctor came out to call me back and when he saw me he straight up told my mom "you need to take her to the hospital right now." luckily the office we were at was right next to Mary Washington Hospital. Unfortunately Mary Washington wasnít fully equipped to help me. once they were sure I was stable they medivaced me to VCU where they took me back and kept me from my parents for hours before they came out to tell them that they had no clue what it was and for now I was stable but it was very likely I wasnít going to live through the night. For the time being we could just pray. Obviously I DID make it through the night and I DID get better.

When I entered the hospital I was 74lbs and dropping. I donít remember much of my hospital stay because they kept me pretty doped up on morphine because I was in so much pain but I know I didnít sleep for days, I was losing my hair in clumps. I lost 7 layers of my skin, I was horribly emotional and rude to everyone(Iím medically bipolar so most of that was because of the medication) I couldnít walk or stand on my own and I had begun to hate myself and my body. When they finally figured it all out they put me on the meds and everything I began to heal (slowly) but the downside was I was so hungry all the time. They were constantly trying to give me food because I had become so malnourished that I needed foods in my system. After 2 weeks I was stable enough to go home. I had to take a whole boatload of pills and I was constantly being slathered in lotions and creams and all this stuff that made me extremely uncomfortable. The only time I wasnít miserable was when I was in a bath. Eventually I let my grandmother shave my hair off. That was so difficult for me. I cried and cried and I sat in front of the mirror for hours just staring at my bald head. I knew I would be starting my freshman year of high school bald with ugly skin and scars on her body.

It came as no surprise that I sunk into a deep depression. Even as my skin began to heal and clear up I didnít begin 9th grade with everyone else I was still too sick for that. I had to wait 3 months before starting school. By that time I had missed pretty much all of my first four classes (my school is set up where we take four diff classes each semester. there were 2 semesters). When I returned to school I was bald and I was 135lbs. I felt fat and ugly. I couldnít hide from people and many of them would tease and torture me. Calling me names or covering their faces as I walked by saying they didnít want to get infected. There were times I would fake feeling sick just to avoid them. The worst of it was when I had to wear a wig. Kids would come up behind me and grab it and run off with it or theyíd say horrible things to me. Would wear hats and just to make me feel bad the kids would say something about it. The teachers knew I had permission to wear hats but the students would make a big deal just to embarrass me.

When I was around my family and friends I had become a different person. I had become rude and moody and I couldnít control it. My mom took me to a therapist and she said m medications caused my hormones to go haywire which had also caused some of my seizure problems. Finally after much time and many arguments with doctors I was finally down to taking two medications: Depakote; for my seizures, and birth control; for my hormones. I finally had some control in my life. My hair was growing back I had been having less and less seizures.

now Iím 2 months from being 18, Iíve graduated high school, I just passed a placement test for nursing school and Iíve never in my life been so proud of myself. In fact my senor prom is next weekend and even though I still have scars on my legs, Iím wearing a short dress. I still have allergic reactions to random things, nothing food wise, only products like makeup. But my skin has never looked better my hair is full and thick and long again and I love it. Plus my weight ha dropped from being 135/140 to 115 and Iím so proud of that.

Had it not been for my experience I donít think I would be anywhere near where I am now. It was a horrible thing to go through but I learned from it, accepted it. Now Iím here alive and well and I want to help others who need help dealing or understanding. My heart and prayers go out to all of you and please know Iím here to help.

-with love, Katie
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ID: 100084 Time/Date: 05:34:00 AM PDT/ 04-27-2010
Name: Lynn
Email Address:
Story: My 7 year old son is recovering from SJS after spending 11 days in hospital, he wasnt on medication and was healthy until he got it, they are saying it was caused through a virus or infection wich i thought was strange as he wasnt ill untill he got SJS. Im just gratefull that hes on the mend.
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ID: 100083 Time/Date: 01:36:53 PM PDT/ 04-14-2010
Name: kia green
Email Address: prettykia@YAHOO.COM
Story: I Was sick with SJS & TENS from taking the pill Lamictal. I laid on the couch for a week not knowing what was wrong with me, I went to the ER they had no idea what my problem was so they diagonsed me with Strep Throat & sent me home. I continued to get sicker I couldnt see,walk or swollow soon I couldnt breath. It was time to call 911. when I got to the hospital my skin was comimg off in a matter of minutes my body had changed. I ended up with a Trach in my throat both Lungs colasped Blindness & Scaring in my Eyes. My body was rejecting the pain Meds so doctors put me in a medical induced coma they also had to paralize me. Doctors told my family I wouldnt make threw the night but I did my best to stay alive I didnt want to die. When I finally woke up what I saw was a Monster I d myself I didnt want to look like a monster for the rest of my life cause doctors said I wouldnt get my color back & I would never be the same. Im still having issues with Depression, I have no fingernails or toenails and I will have trouble with mt eyes for the rest of my life but I have learned to accept mysef for who I am. I have never met anybody who has had SJS I use to feel like I was the only person in the world with this syndrome but im glad to know im not alone
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ID: 100082 Time/Date: 07:39:53 PM PDT/ 03-30-2010
Email Address:
Story: my kid name is ali ghazi when he was 2 years old he had fever i take panadol syrup after two days of fever i go to my nearest clinic dr gave "ridmal"its a sulfa drug syrup for antimalaria.after that my child conceous next evening we run a hospital when we go to hospital i wach his face and hair by water because i understand he had high fever when we are in the way my kid unconceous when we reched hopital they give him napa and cecrol(cefxine)i think some spell mistake.ali ghazi is fine after that i go to next day to my family doctor when some little blister starts he take another antiboitic .after one day blister become large we go to speelist doctor he gave him titan injection daily dose for 5 days but after 2 days a skin spcelist said to me stop all medication and go to most best hopital.we go national liaquat hospital due to not any room we back again small hospital then i try next morning to admitted ali he acecpted and admit in ICU now his all body were just like burn his face, hand and legs .we stay more then one month there.after that docters release him after another one moth all blisters healed slowly but his eyes closed doctor and his vision low and low but doctors do nothing only takes some eyes drops every 5 minutes after three months when he was blind then doctors do operation of amt and tarrssoraphy in one eye after one month another eye.during these i search internet for new treatment i saw a name lv parasad eye institute in india i try to go.i got an appointment then i take visa for family and we travel pakistan to india .when we reached there dr sangwan says how can i stemcell its very dry eye and not healed this moment .my whole hope distroy in one day .my one years struggle finished in one day.after that comming pakistan i dont stop to search best hospital in world then i email differnet organization for treatment and education i received books for kid from usa,uk south africa but no any email from treatment advice then i got a email from canada .helen milne who is the founder of milne sjs society she promised me to another opinion and treatment to best doctors in world .she struggle alone for us.resulting 2 months she got appointment and funds for my kid.she gave me contact to patricia who live in leeds she helps me lot in uk .she gave me lot of contact for media and transport.she meet me and raise fund for ali. in uk joe way gave me media support tey gave me space my stroy in his website.after checkup in anehetia doctors said there is no hope for stemcell due to dry surface but doctors done his lower eye lid recontructive surgery in boh eyes .now my kid have no pain in eyes his both eyes eye lashes in correct.we still wait for some years then doctors done another operation for vision .i am thanks full for helps me.
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ID: 100081 Time/Date: 10:36:12 AM PDT/ 03-24-2010
Name: Kathryn
Email Address:
Story: I don't know where to start. I feel blessed that I didn't have the horrifying reactions that some people had, but sad and angry at the complete inability of the medical system to recognize SJS.
I was given Lamictal by my Psych as an adjunctive to anti-depressant on November 27,2009. By December 2nd I felt awful, thought I had flu. Fever (100.5) malaise, really bad joint pain, fiery sore throat, sore eyes. Found blisters on the back of my throat. Got on the internet. Realized this might be SJS so I stopped the Lamictal.
The next 10 days were spent in and out of emerg departments at the finest hospitals in my area being told I had herpes, chicken pox you name it. Finally diagnosed by a dermatologist. I ended up with mouth and tongue sores, vaginal and anal sores. Strangely, although I developed spots on my skin, they never blistered. But my insides sure did. I lost 30 lbs in 3 weeks when I developed diarrhea so bad I couldn't eat anything. I ended up on inhalers for tracheal damage. The doctor thought I had caught a 'bug' SOME BUG!
TO this day, since I didn't develop classic lesions, some dr's still don't think it was SJS. But the ones that matter are sure of it.
Fast forward to now:Here I am 3 months later, jaded by the medical system. I won't take anything except the meds I have always taken (thyroid etc). I won't take Advil and take a child's dose of Tylenol for menstrual cramps.
I deal with a Naturopath now, still 30 pounds lighter, I have to wear glasses PERMANENTLY due to a deterioration in my long distance vision. My periods are totally unpredictable (uterine damage?) and I still can't eat citrus or spicy (my two favourite foods) because I get sores on my tongue. I can no longer tolerate red meat, and I am completely gluten intolerant. I am on a special diet.
I won't let my children take Motrin/Advil and I am not so fast to take them to the doctor for antibiotics etc as I used to be. My dd is allergic to azithromycin, I never realized until I read here how serious that could be.
Still, I know that I was super, super blessed. Most of the doctors failed me, but God sustained me, and in time I will heal. And I got off SO lucky!
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ID: 100080 Time/Date: 01:03:33 PM PDT/ 03-21-2010
Name: Marilyn Sprague
Email Address:
Story: My daughter Kim at the age of 6 yrs. (she's 23 now) was diagnoised with SJS, at first they thought she had chicken pox and sent her home, 3 days later she was starting to die, took her back to the hospital and they thought she had been scalded in water for her skin was peeling off and she was bleeding. She spent 32 days in intensive care and 6 months after that in healing from the inside out, she bled from the inside., her fingernails fell off and she lost some of her hair.
The Dr.s at first told me she had a 25% chance of making it or would be blind if she lived through it. She has scars and I have nightmares to this day. 17 years ago this disease was unknown and only a few Dr.s had ever seen it. She was air lifted to Portland, Or. and put in intenseive care there.
She was on Dialitin for seizures and the side effect of this medicine was SJS, but we were not told this by the Dr. or the pharmacy. To this day we are caucious of all medicines given to her for she can still get this syndrome and once it starts it goes full blown. I am thankful that she lived through it. Thank You for reading my story. Marilyn Sprague, Klamath Falls, Oregon
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ID: 100079 Time/Date: 07:46:51 PM PST/ 02-18-2010
Name: amanda
Email Address:
Story: In December 2009 our seven year old got a sore throught. It was the middle of the night so I took her to the hospital. The doctor put her on bactrim and sent her home. The next day she was not getting better so I took her back to the hospital. This time I was told that she was having a allergic reaction to something she ate. She was givin a shot and sent home. We were in and out of the hospital in 15 minutes. Hailey cryed all that night. She complained of sever body aches, upset stomach ache, and she said she was burning up. The next day we were back at the hospital. This time a doctor named Dr.Dudly refused to belive that hailey was just having a reaction to bactrim. She made call after call to other doctors to confirm what she was suspecting. After multipule phone calles I was askes for permission to transport hailey to Oklahoma Childrens Hospital because she belived that she had sjs. I agreed and we were transported by ems 137miles to childrens hospital. There was a team of doctors waiting for us when we got there. Hailey was put on iv fluids, more test were done on her and she was taken to a room in the PICU. Hailey spent 5 days there before a definate answer was givin. It was sjs, and mis disagnosed asthma. For four days Hailey had blisters from the top of her head to the soles of her feet. Her eyes were swolen almost completely shut and she could not stand on her feet without crying. I thank God for Dr.Dudly; and the team of doctors at Oklahoma Childrens Hospital that treated our daughter. These doctors saved her life. Thank you again. God Bless You All.
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ID: 100078 Time/Date: 06:42:21 AM PST/ 02-10-2010
Name: caroline
Email Address:
Story: hi, i was diagnosed with SJS when i was 30 infact right on my 30th birthday. It was never clear why i had got it, i was allergic to penicillin, i found this out when i had Glandular Fever at 17 and had a allergic reaction. However, at the time i had a nasty case of tonsillitus, and just as i thought i was getting better, (and was on antibiotics) i cant remember what they were now as im 40 now, but i obtained this really bad rash on my torso and i felt ill. As it was my 30th birthday i went out with my friend to celebrate, even though i didnt feel 100%, and i had this rash, but ignored it. So i went out, drank alcohol, felt better, then woke up the next day unable to move, and feeling so ill i thought i may need to go into hospital. My whole body by this time was covered in legions, and the rash had spread, i thought maybe it was just a severe hangover, but i couldnt move out of bed. When i got to a doctor he looked at the palms of my hands which were covered with this rash and said it was SJS. I was not referred into hospital care even though i was ill, and covered with red painful legions on my arms and legs. To this day, iv always wondered if i was given penicillin by accident for my tonsillitus, as back then i knew very little about the serious side of SJS, i was told nothing about it until some years later i read about it on the internet. It is a nasty thing to experience, i remember taking anti histamines to take away the burning and tingling sensations, but i will never forget how ill i felt, yet i was never hospitalized.
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