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ID: 100148 Time/Date: 10:11:47 PM PDT/ 08-16-2011
Name: Miru11
Email Address: EmailAddress@notprovided.com
Story: I was diagnossed last week with SJS. I am 27 years old. I'm now at Memphis, TN on "vacation" and I became sick with sore throat, fever and blisters beginning in my mouth and progressively increasing and appeared inside my mouth, throat, ears, vaginal zone and thereafter rashes in my skyn similar to burns with lot of pain. I was prescribed with lamictal to treat my depression and humor change disorder...but this medicine generated a reaction which caused SJS, which as you may know is quite worst than any depression you may have. My case was treated fast I guess, (even if at the begginning doctors believed it was herpes). When I was hospitalized I was treated with iVIG and I believed that helped me. I recomend to ask for that treatment. Currently, I'm in a lot of pain taking morphine and other drugs as steroids. I can't eat or swallow well but I'm trying to be strong and get recover, even more now that I know how this illness works and how is affecting people and specially children. I wrote this for everyone who have or had SJS and wants to know that we are not alone and that supporting each others we may do it.. I have received also my family and couple's help. Keep togethervitnis important!. i am trying to fight. Let's pray for all together every night we might. We can do it together..we always be SJS's people but we are looking forward to fight it. Let's do it!
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ID: 100147 Time/Date: 02:40:54 PM PDT/ 08-15-2011
Name: Sonia McAlister
Email Address: auxfire@sbcglobal.net
Story: In June of 2009, three of my Dr.'s put me on medication, while on Vacation in July, I developed a rash, the rash got worse as time went by in August, I had rash everywhere and by the end of september, I went to the ER with a horrible rash that I had since the latter part of June. The ER thought it was an allergic rash and gave me a prescription for a oral steriod and told me to continue taking Benedryl. Two days later the rash continues, by the weekend, I found myself back at the same ER. They gave me a shot of a Steriod, because I insisted they give me something. That was a Sunday and by Tuesday, my mom came and took me to a different ER after she called my Dr. and insisted I be seen, although I tried and couldn't even get in. By the time I reached the ER I had kidney failure and my skin was peeling from the top of my head to my toes. The ER Dr. told me that he was going to try and reverse the kidney failure and told me that he thought I had SJS, but he wasn't sure. I was in the ER from 11:00am to 7pm, when they took me to another hospital to be admitted for my kidney failure and that this hosptial was the best for that particular condition. While I was there, I saw a physician that diagnosed me with SJS and said if I didn't get better they were transporting me to San Antonio, TX to the burn unit. Thankfully, I had great Dr.'s and my kidneys are doing so much better. If would have been nice if when I first went to the ER, they were more aware of SJS and it's symptom and had treated me for it, but they didn't. I was in the hospital 9 days, and I still have some itching issues but am doing so much better now, even 2 years later. The Dr.'s told me I had a severe allergic reaction to the 3 medications that I had started on, I reported the information to the Dept. of Health in Washington, D.C., so that they were aware of the situation. The 3 meds were Cymbalta, Nuvigil and Oxcarbazepine. I have a Medical Resume that I carry with me, because I'm on so much medication and I have countless allergies and my Dr.'s are able to stay on top of what I'm on, and it's so much easier to not have them give me something that I'm allergic to.
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ID: 100146 Time/Date: 08:20:26 PM PDT/ 08-14-2011
Name: Mackenzie Bruno
Email Address: kenziie922@aim.com
Story: My name is Mackenzie, I am 18 and have a 2 year old daughter. I had TENS and am extremely blessed to be alive. It all started on August 7, 2010, I woke up with a bump on my genital area that was very sore. I didnt think much about it until the pain worsed and I noticed two bumps in my mouth, I then when to the doctors late that saturday night. The doctor was convinced it was herpes and prescribed me a medication. The pain worsed through the night. The next morning i woke up to my daughter and couldnt open my eyes. I was in extreme pain and my body was covered in red painful bumps. My mom took me back to the same doctor, he saw me and advised I go straight to the ER, he suggested I could have SJS not herpes. I was diagnosed with Steven-Johnson Syndrome and my illness progressed quickly. After 3 days at lutheran hospital, I was taken to St. Joe to the burn unit. Within the first day I was on a ventilator due to the sloughing of my esophagus and I was put on a feeding tube. I lost 98% of my skin and everything that could go wrong did. My lung collapsed and took days to inflate. My liver had abnormal readings, and i was receiveing insulin every few hours. I had a staff infection in my blood, and they did plasmaphresis for five days. From being in the hospital i got c.difficile (deadly bowel infection). My doctor was sure I would not make it, but did everything he could to change that. They determined my TENS was caused by celexa. My mother was by my side through the whole thing, even though I didnt know what was going on. I was in a sedated coma because of the pain. I finally was released and taken to Lutherans rehabilitation center on September 10 and went home September 21, the day before my 18th birthday. I missed my daughters first birthday on August 23rd, but finally got to celebrate it when i got home. I had outpatient physical therapy for a month when i got home. Life will never be normal for me, my eyes are damaged and my vocal cords are damaged. I've had three surgerys, one on my eyes and two on my vocal cords (which were not successful). My voice is very raspy and quiet now. I have a great support team, and couldnt of made it without all the prayers!
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ID: 100145 Time/Date: 05:54:02 PM PDT/ 07-22-2011
Name: Misty Farrell
Email Address: charishedangel01@hotmail.com
Story: My story begins right around July 7, 2011, that was the night we rushed my daughter Mika ( who had had a cough and a low grade fever for a few days) to the local ER when her fever had spiked to 103.4 degrees after at least three to four hours at the hospital they diagnosed her with pediatric pneumonia. they put her on amoxicillian for the infection. Then at her follow up appointment the following Monday July 11, 2011 at her family doctor's office they were concerned that the antibiotic that was given at the hospital wasn't enough so they added another one to the mix, never taking her off the first one. The next day she seemed better her fever broke and she was returning to her normal self. Then everything went south on Wednesday July 13, 2011. She presented with a rash and a high fever, once again she was rushed to the ER and there they told us it was an allergic reaction to the first antibiotic ( the amoxicillian) they instructed us to stop that medication but continue the other. Her father and I decided to stop both. Thursday went by without cause, then Friday July 15,2011 our world came crashing down when she once again at her follow up appointment with her doctor they wanted to consult with the other doctor that works at the same practice, and then both doctors felt the need to consult with the area children's hospital, who told the doctor to tell her dad that he needed to get her to their hospital ASAP. I was at work and raced out the door so I could be with her. We got to the children's hospital ER where they took us right back and came up with the Stevens Johnson Syndrome diagnoses. She was admitted to the infectious disease unit. We spent the first night getting settled into a regular room in that unit, then the next night after running test after test and poking and proding my little girl and making her miserable they moved us into isolation telling us it was precautionary because they had tested her for chickenpox. we spent the next four days in that room watching numerous doctors come in and look and stare at my daughter and her swollen eyes, blistered lips and body just because they had never seen SJS before ( it was a teaching hospital). They started her on IVIG treatment that Saturday and continued treatment until Monday night. Tuesday she was doing a little better drinking more on her own and eating a little here and there, mainly eating yogurt. Then on Wednesday she must have pleased the doctors enough to get to go home, because they discharged her on Wednesday July, 20, 2011. She is now at home and doing much better but she is still on pain meds, eye treatments, mouth treatments and of course having to put neosporin on her broken blisters and keeping them clean. We have contacted an attorney who says we have avery strong case considering she should still be in the hospital.
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ID: 100144 Time/Date: 01:58:05 AM PDT/ 07-19-2011
Name: debbie williams
Email Address: debbiewillimas23@hotmail.com
Story: hi my name is debbie williams, and in aprilthis year my 3 year old son george began feeling a little unwell, he was laid on the sofa for most of the day, it was a wednesday.by wednesday evening he had a temperature i checked this and found it to be quite high,he had chapped lips aswell which he had had for around 2 days.the weather had been hot and i presumed he caught to much sun. I gave him the lowest dose of nurofen for children,2.5ml and it didnt touch his temperature so 5 hours later i gave him another 2.5ml .
he fell asleep and i wasnt too concerned thought hed maeybe picked up a bug and would sleep it off.I woke up thursdaymorning to find george in my bed which he never did.i instantly knew he was no better, he seemed very sleepy and was still really warm.i phoned the doctor who couldnt see him until 5pm that day.whilst on the phone and monitoring george i became aware that his lips were swelling and he had some puffiness around his eyes.his voice seemed muffled, and thick. i rang 999.the ambulance crew arrived but in the shoet time of me waiting for them i realised george was reluctant to sit up.he seemed very drowsy.the ambulance crew arrived and they asked if hed had anything different to normal. the only thing i could think was the nurofen as hed never had it before.they decided to admit george straight away.we arrived at A&E , my husabnd came down and grace georges sister, quite a few doctors saw george , but didnt really know what it was.although i think everybody suspected an allergic reaction to nurofen seen as though that was the only thing hed not had before.aswe were in A&E we began to notice 2 small sores appering on george just looked like scraped skin.george was admitted to the disney ward.Many tests were carried out and george was given antibiotics although not orally as he was having difficulty swallowing at this point.althoh he was still fairly alert and chatting a little.by the next morning (friday) george had a few more sores on him.the nurses said george wasnt improving on the antibiotics.geoge was also refusing to pass urine so had to have a cathetar fit.george pulled this out so had to go to theatre for one fit staright into his bladder. his penis had become serverly swollen and red.
bythis point friday night.georges skin had started to redden all over and we noticed more of these sores appearing.george was refusing to eat, but thankfully was still drinking.he was still fairly chirpy.then through friday night george took a dramatic turn, he was itching all over and became extremly aggitated .he was almost unresponsive.ibecame terrified.
the doctors at this point were treating george for scolded skin syndrome. by saturday morning the nurses decided to ring sheffield childrens hospital for adviceon gbeorges condition......and all of a sudden it dawned on me that tyhe doctors didnt know what they were treating and that georges condition had become critical.they informed us that they thought after advice from sheffield that they weretreating steven johnsons syndrome.i'd never heard of it.but they just kept reassuring methat he was fine and would be ok.they were brilliant im glad i didnt know what i know now or i would have had a breakdown.
by this point they had bandaged some of george to try and stop it sticking to the bed sheets.george began to not be able to see very well.they told us they were transferring george to sheffield via ambulance and that we wouldnt be able to go in the ambulance with him as they were managing a compromised airway!!!!!!!!!!!! so they needed a team of medical staff with him so for his safety it was best if we made our own safe way there. that journey wasthe longest of my life. i couldnt helpthinking that he wouldnt be ok when we arrived.when we did arrive the scunthorpe nurses were waiting for us and gave me a big hug and informed us he was on the burns unit where they could give him the skin care he needed.i needed some answers now and the doctors at sheffield told me how rare this condition was they also informed us that georges condition wasnow t.e.n.s syndrome which is the worst case of steven johnsons where more than 30% of the body is affected .by now all his face was affeceted andhe looked as though hed been in a bonfire!!!!! my heart broke! george couldnt open his eyes due to all the swelling and puss.that night (saturday )they transferred him to high dependancy! he was given immunoglobulins intravenously! and that was georges worst night.he was like a sleeping baby! he was so very poorly.the nurses told us that tens carried a one in three mortality rate! i prayed!!
by the morning george seemed to be picking up abit he sat up was listeningb to the telly and making small chit chat.he was allowed back to the burns unit.he had another 4nights of immunoglobulins each day improving i knew hed made it! he was so brave!the one moment that broke my heart was when daddy fetched george a new to cay and gave it to george and george said daddy can you tell me what colour it is?.he also asked if he was going to die?!!!!!!!
we came home with george the day of the royal wedding! he still had shedding skin which he didnt like. but was soing amazing .he had eyedrops and medicine for a week. and returned to school 3 weeks later.he loved the fame when he was on the local news and in the national paper.george took this horrific ordeal in his stride but me and ben new just how lucky he had been.everyday i thank god for him and the doctors and nurses who saved george! 4 months on and george is doingamazing he has just been sighned off fom the eye clinic with full vision! and doesnt need any follow up .he is my shining star and i truley believe the immunoglobulins saved him before it took hold compleatly!
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ID: 100143 Time/Date: 01:57:16 PM PDT/ 07-13-2011
Name: james russell
Email Address: jtr265@yahoo.com
Story: In the month of November 2010 I recieved a phone call from a friend informing me that my mother Patricia Russell was in the hospital and had a fever. When I arrived at Temple Unniversity Hospital I was told that my mother was located in the burn unit and that she was transferred from Paoli Hospital. When I finally located my mother I was very shocked and emotionally distraught once I noticed the severe burns that she had on her face and body. I immediately asked my mother's doctors and nurses what was the cause of her burns and fever. I was informed by her doctors at Temple Unniversity that the causes of her burns were due to a side effect from using a drug called Levaquin. The Levaquin gave my mother diabetes, high blood pressure, tendinitis, nerve damage and worst of all STEVEN JOHNSON SYNDROME!!! My mother stayed in the hospital for a month with severe blisters on 80% of her body, face and mouth. A breathing tube was used to assist my mother with breathing due to the severity of the disease. My mother is still trying to rehabilitate herself but has become depressed due to a lack of financial and physical stability.
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ID: 100142 Time/Date: 01:32:19 PM PDT/ 06-14-2011
Name: Kelly Greene
Email Address: EmailAddress@notprovided.com
Story: Hello,
My name is Kelly. according to my mother I have Stephen Johnsons Syndrome, or rather I had it, I guess. The reason I dont know my own story and have to go off what my mother tells me is because I developed this and Serum Sickness when I as 14 months old, I suppose the first thing I had was Serum Sickness and I became very ill then the hospital gave me Penicillun and that is when the SJS stepped in. at age 28 months my mother was told there was nothing the doctors could do and if she signed off on experimental drugs they could try that. Mind you this was back in 1979 when it happend so they did not know about SJS (supposadly) and to make a long story short I survived and according to my mother I was the first survivor of this, the hospital thought I was going to die until an intern doctor suggested they "clean my blood" I guess they took all my bad blood out while transfusing good blood in, I had already had 2 blood transfusions and developed staph infection in which left many many scars throughout my entire body, especially my face. The SJS then took over my left eye in which now I have 9 pin size scars on my retna and am for the most part blind, but if it is true that I am the first survivor of this horrific thing then I am glad to be alive and to have taken on these scars so that others dont have to. I do however want to make it known that this disease is suppose to be serious but every time I have gone to a doctor and I tell them I had this, they pass it off like it is nothing, yet you can see the scars on my face vividly, I litterally have a hole in my chin under my lip because the infection ate away at my skin. and now I have some health issues again and they think it may be RA or Lupas, I am wondering if it is a backfire of the original problems I had through my childhood.
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ID: 100141 Time/Date: 04:56:40 AM PDT/ 06-14-2011
Name: stacey
Email Address: staceygill195@msn.com
Story: it all started when my 16 month old daughter was taken in by ambulance due to a pro longed seizure the medication they gave her to stop the seizures was phenytoin, to which at this point i was so grateful they had a drug to stop it.
until a week or so had passed with re visiting the hospital because of high tempreture i knew something was still very wrong, she was admitted to one hospital and for 9 days they did not know what was wrong with her they done several blood tests that after so many they couldnt find a vein to do any more, they finally decied to send her somewhere else because they couldnt find the cause and yet still gave her dose after dose of phenytoin.
we was sent to a hospital that had an infectious diseases unit, until we got there we didnt have a clue what was happening to our precious baby girl, one consultant that was looking after her took one look and knew what it was straight away 'SJS' he told us so immediately i went online to find out what this was, i couldnt believe what i was reading, was my baby going to die from this? at the hospital i couldnt bare to watch her go through this but i had to stay strong for her sake if she was fighting it i could atleast stand by her bed side. her body was burning from the inside out she had blisteres forming ontop of blisters and just bursting, her mouth was constantly bleeding, her eyes were so red with blisters on the eye lids, her arms and legs were bandaged to stop the sores from rubbing.
but she finally pulled through but still has to go for check ups on her eyes. she wakes in the night screaming, this awful drug they prescribed nearly killed my daughter!!
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ID: 100140 Time/Date: 05:54:59 PM PDT/ 05-31-2011
Name: Karen Bies
Email Address: dalejrisno1@mchsi.com
Story: When i was 14 i broke out in a rash. I was taking penicilin and bactrim. when I first noticed the rash it started on my wrists and it itched really bad. by the next day my eyes had swollen shut. my mom took me to Lacrosse wi and with in 15 mins of being in lacrosse I was in the hospital and they were running test. the drs discovered it was sjs. Back then is was still pretty rare and nobody new much about it. i am non 38 yrs old and belive I have sjs again.
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ID: 100139 Time/Date: 06:33:09 AM PDT/ 05-21-2011
Name: chadia
Email Address: chadiazouhri@hotmail.com
Story: princess amira age just 4 passed away with ten.amira was diagnosed with leukemia on 1st of feb 2008 and died on 19th of march 2008. we was told amira had to have a antiobitic every weekend to stop amira from getting neumonia. we said we had stressed to the doctors that we think that amira was allergic to it.they just carried on . amira had swelling dowm below and they did swabs etc.any way they carried on with the medicine .after 6 weeks amira had a red mark on her cheek like amira had be burnt.then blisters appeared all over amira .and all her skin was coming of.sadly amira died.we had to bury our little girl in bandages.amira we wouldnt want you back again to suffer all that again.how can doctors get away with it .could i sue any one. rip our princess you was simply the best the bravest and the most beutifull little girlxxxxxxxxxxxxxxxxxxxxxxxxxx
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