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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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ID: 100077 Time/Date: 12:51:34 AM PST/ 01-31-2010
Name: Heather
Email Address:
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:
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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