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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
Name: irzumjan@yahoo.com
Email Address: EmailAddress@notprovided.com
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: EmailAddress@notprovided.com
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: msprague68@yahoo.com
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: motherburr@yahoo.com
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: serenity38@live.co.uk
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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ID: 100077 Time/Date: 12:51:34 AM PST/ 01-31-2010
Name: Heather
Email Address: leekats@msn.com
Story: I started taking Lamictial 3 weeks prior to my "break out" I got really sick about a week before I was hospitalized in July last year. It started like the Flu. I went home from work sick on July 20th and did not move from my couch for 2 days. Running a fever of 104 and not being able to bring it down. I went to the Doctor and he did some test and sent me home with strict orders to stay out of work until he knew what was going on or I got better. I told him I thought it was mumps because the last time I felt this bad was when I was a child and almost died.

I got much worse a few days later and my doctor could not get me in. I went to the ER and they told me it was the FLU most likely the Swine Flu and gave me Tamaflu and discharged me. When they were wheeling me out to my stepmothers car I passed out. I woke up to the wheeling me back into the emergency room and starting more tests. Once they determined I would "live" the sent me on my way.

The next day I developed a terrible rash on my face and upper torso. I called my Doctor and let him know what was happening. This was on July 23rd. He brought in another doctor and they did not have a clue as to what was going on with me. (I have to say I love my doctor, he is a good family friend) They asked me to give them a little more time to figure this out and they would check with me again on Monday. I went home with an over whelming feeling of dread. I KNEW something was not right.

On the 24th of July, which is a holiday here, I had my husband take me to the hospital in Salt Lake City The University of Utah. Because a friend that is a nurse told me to stop messing around with small town hospitals and get my behind to a major hospital. I knew I needed to be seen at the University of Utah. After a very long emergency room visit I was advised that I probably had Stevens Johnson Syndrome, however the test was expensive and they did not do the test unless it was severe and they wanted to try medication first. I was given steroids and if I remember correctly antibiotics. They sent me home and told me if the rash spread at all to come back immediately.

I got up early Sunday morning because I was in such discomfort I could not sleep. I did a lot of research on the dangers and the long-term effects of SJS. When I went to get dressed I found my rash had spread. It covered my feet, entire face, my whole body except my legs below my knees. Really weird I know. I woke my husband and he took me back to the emergency room and I was admitted within an hour. I was there for 5 days. I started in the burn unit and them move to a non-critical ICU, then to a regular hospital room. I was given Immunoglobulin its a blood product and replaces what was damaged. I don't understand it all but I know it help. I was very blessed, it is usually much worse.

It took more than 6 months for me to feel mostly whole. I still get tired very easily but I have more energy than I did when I was first released. I have had no further breakouts and no side affects thus far. I do have to go in for a few tests this month to make sure but I do know things are better.

The Lord intervened and spared me a lot of the trials of this disease. I pray for all that are still struggling and dealing with the after affects.

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ID: 100076 Time/Date: 12:17:37 PM PST/ 01-19-2010
Name: Sara E. Ratliff
Email Address: saraeratliff@yahoo.com
Story: My name is Sara and In 3 months I'll be 21. I was diagnosed with Stevens Johnson Syndrome in February 2009. It hasn't even been a year and my life has been turned upside down! On February 1, 2009 I had symptoms of the flu so I went to the doctor. He said I had the flu and not to go back to work until February 3. On the way to work on the 3rd I passed out and hit a tree head on. I was given Lortab for the pain. On the 4th I woke up a little itchy, but nothing I couldn't handle. The next morning I was throwing up and my doctor said it was just because of the medicine so he gave me Darvocet. On February 6th I woke up and was covered from head to toe in hives. My doctor couldn't see me that day and told me to go to the ER. The ER doctor gave me medicine for the itching, and told me if the rash wasn't better by the morning to come back. Well, just my luck the next morning the rash was way worse and my eyes were very sensitive to light. I had to wear sunglasses all day and night while awake. That night I was hospitalized for my rash. That was on a Wednesday. That Saturday the on-call doctor told me I had Erythema Multiforme Major(SJS) and it was not looking good at all. It was to the point that I may not go home from this visit. My eyes became very dry. I was having to put eye drops in every hour on the hour. I began getting blisters in my mouth too. I woke up one morning as a nurse came in my room and I told her it felt like a elephant ws sitting on my chest. She told me it was anxiety. And I told her that I have had asthma for 6 years I think I know when I can't breathe. Well she brushed it off and didn't pay any attention to it. When the doctor came in I told him about my chest discomfort. What do you know I was wheezing and my lungs were drying out. I had to do numerous breathing treatments everyday. The hospital brought in a Infectious Control Doctor, a Opthamologist , and a Dermatologist. After a few days my rash started to fade some. I kept getting one step closer to being out of that hospital till the night before I was supposed to leave. My blood pressure dropped to 23/19 and I felt like death was upon me. The doctor came in and gave me medicine after medicine to rise my blood pressure to at least 100/80. After almost 16 hours of pushing meds into my body my blood pressure went up and stayed at a normal range. I finally got to go home on February 18, 2009. Not even a week and a half later my rash decided to come back for two days. Since then I have difficulty doing day to day stuff. I have no energy most days, my vision is horrible. I can't drive at night anymore. I wear sunglasses all day and night while I'm up. My skin itches no matter what I put on it. My hands and wrists get blisters on them everyday for no reason. My skin peels off a lot. I still get blisters in my mouth from time to time. Most days I'm so depressed I don't even want to get out the bed to do anything. But, I know that one day maybe just maybe there will be hope and a cure for this disease. So people just like me can live some what of a "normal" life.
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ID: 100075 Time/Date: 08:43:27 AM PST/ 01-14-2010
Name: Joyce McCauslin
Email Address: jlmccauslin@iu12.org
Story: Seven years ago in Nov. 2003 I developed SJS-Tens from my head down to my torso. I spent 40 days in the burn unit in Baltimore. My reaction came from taking Advil. It left me with severe eye damage. Never in my wildest dreams did I ever think something like this could happen to me. My life was turned upside down over night. In those seven years I have been fighting to get my life back to normal. Getting the special contact lenses has been a big help, since I have repeated misgrowth eyelashes (trichiasis). Once a week I have a set appointment to get my eyelashes removed. I had several operations done to remove Keratinization of the mucous membranes of my eyelid, cornea scarring and severe dry eye syndrome. The only way that I can alleviate the severe pain is by wearing a pain patch. Also, I have light sensitivity. I put eye drops in every fifteen minutes . I flew to Boston several times to be fitted with the special contact lenses. I would recommend anyone to get them. The only downfall is they aren't covered by insurance. God saved my life three times and it's a miracle I'm not blind. It took me seven years to be able to use the computer. I had to go back to work because we need the health insurance. Sometimes it's very difficult to get through the day because of the pain. Praying is what got me this far. When I feel like I can't go on, I start praying. God has been so good to me. There is a reason this happened, but I may never know why. Maybe it was a wakeup call to make me be more thankful for what I have in life. I have three beautiful grandchildren and they couldn't have come into my life at a better time. I still have times I want to hang it up. Then I have to remind myself that there are so many things I have to be grateful for. I pray for everyone that this may have happened to, that God will give them strength to handle whatever they have to deal with. God Bless, Joyce McCauslin
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ID: 100074 Time/Date: 09:26:45 AM PST/ 01-07-2010
Name: John
Email Address: EmailAddress@notprovided.com
Story: About three months before my 19th birthday, I was playing drums in a hardcore band...I had had a rather large fever blister...when playing in a particularly heavy moment in a song, I had struck myself in the face with a drumstick causing the cold sore to rupture pus and blood - both of which mixed and leaked into my mouth. I had gone home, feeling tired nothing unusual. But about 1 a.m. I awoke with mucous spilling out of my mouth, couldn't breather through my nose, was very weak and feverish. I had crawled out of bed and woke up my parents. They of course freaked out, I remember being in quite a state of shock as I looked at my hands covered in lesions...the worst crossed my mind. I thought for sure that I had contracted AIDS...I was a kid, I didn't know. My parents took me to the emergency room, the first doctor to see me wanted to start me on steroids. My parents contacted UVA and was told by there Medical Dermatology Dept. that if I were given steroids - death would be imminent. My father stopped them from using steroids, obviously. The second doctor to see me in the emergency room was from Nigeria...had he not been there, I would have been easily misdiagnosed with something or other because the doctors at this emergency room had never seen a medical case such as this and didn't know what was going on. I owe my life to such a strange set of circumstances, that one could only conclude it was most definitely God who had stepped in - there is no other explanation. I mean, what are the chances that one doctor, from Nigeria, in a small city (less than 100,000) would be able to accurately diagnose this condition? Anyway, I digress. At the time (summer of 1992) I had been one of two people out of the ten people recorded in ten years to survive this curse. Although I cannot stand drugs AT ALL, I am quite thankful that my family was there to press the morphine button, to help me to and from the restroom, to continuously run the suction machine for me DAY & NIGHT to keep me from drowning in mucous. I don't remember a whole lot (thanks to the morphine), but I do remember them being there, keeping me company, caring for me (more than hospital staff could, or would). I also remember the looks on peoples faces anytime I would go out in public (which was not often) after getting home from the hospital. I remember being on an oatmeal/liquid diet for almost 8 - 9 months after getting out of the hospital. But here I am now, almost 18 years later, shaking like a child afraid of the dark - or more succinctly what's in the dark, as I write this letter. Yes, I am alive. I made it, but to hear the doctor's version, I BARELY made it. To this day, I still very rarely take any kind of medication (even though I know my SJS was caused by a fever blister)....A few years later, after the first breakout of SJS, I had contracted a milder form known as erethyma multiform (not sure about the spelling). A new fear hit me then, because I was the father of a three year old little girl at the time...someone whom I love second only to Jesus Christ. But, again, I survived, rather unscathed this time. Now, today 1/7/2010 - I am to play a gig tonite, in a Christian metal band...and I have another fever blister - 18 years and five months later.
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