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ID:	100170	Time/Date:	06:12:00 PM PDT/ 04-20-2012
Name:	Armando
Email Address:	Sithreaper619@yahoo.com
Story:	My son has been suffering with sjs for five years. At it's worst I wanted to bury him and kill myself. This year at 16 he started smoking marijuana. He has had two eposodes this year, and this is the first time in five years he did not spend a month in icu with ivig's. Hepm is an imumosupressent that has worked for him this year. It never left his mouth to his skin, just sharing my hell.
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ID:	100169	Time/Date:	07:04:13 AM PDT/ 04-16-2012
Name:	shenika thaxter
Email Address:	sturn247@aol.com
Story:	Hello, my name is Shenika Thaxter and I just had a recent encounter with ten syndrome due to my son being allergic to sulfa (bactrim). He waw recently discharged after 15 days, most of it spent in icu. My youngest son of two, Tyrelle Turner is 10 & was taken back and forth to Physicians Quality Care and the ER at Jackson General Hospital in Jackson Tn for a week due to a persistent headache and a high fever I couldn't break, which later resulted in a rash all over his body. He went to his regular drN dr john michael briley to check on the sinus infection that he had in which he was prescribed bactrim, march 9, 2012. He went to his dr march 20, 2012 for an xray of his sinus, but I did inform them that he had missed school mon due to fever and headache.on wed I took him to Physicians Quality Care for headache and fever, and dr stated that he had tonsillitis even tho he tested negative for strep and flu. He was given zithromax. I took him back to physicians quality care Friday due to headache, fever, and rash. Dr said it was an allergic reaction to medication, and to stop taking it. He was given atarax for the itching. Saturday the rash was even worse and my son was disoriented with labored breathing so I took him to the ER at jackson general, sat, march 24, 2012 & dr jackie taylor sent him home with a 103 fever and visible blisters on his mouth with diagnosis of scarlet fever even tho he again tested negative 4 strep and flu. Was given a tylenol and a prescription for erithomyocin. His condition worsened & his health rapidly deteriorated within several hours. I took him back to the ER again & we sat in the waiting room with visible blisters all over his mouth & neck, rash, fever, problems breathing, and disorientation for an hour and a half. Dr's didnt know what was wrong, so we were sent by ambulance to Lebohneur childrens hospital in memphis, tn. He was then diagnosed w/ten syndrome covering 75% of his body & was flown from memphis to arkansas children hospital in little rock, by helicopter to their burn center. I had to drive there since there was no room for me to fly with me. I was scared to death, ignorant to this syndrome, not knowing if my son would live or die. It was only 2 hours away from the hospital,and drove there with my older son and my boyfriend. We got stuck in traffic, so it took us twice as long. My son was admitted to the burn unit march 25, 2012, but was moved to icu the same day because he airway was so swollen, he had to be put on a ventilator and a feeding tube. We were not released until april 10, 2012, but he is still scarred physically, emotionally, and mentally. My son has never been hospitalized and had pretty healthy. This has been a scare to me and my family. I have been letting my community know and letting them jnow about the different drugs that cause this and the side effects we often miss and overlook. I have been unable 2 return 2 work since he is unable 2 return 2 school this year due to the wounds and the physical flaws in his skins due to the burns. I have had my utilities turned off as soon as I returned back home 3 days later. This has been so traumatic, but my son has managed to smile thruoughout this whole ordeal. Please share my sons story. Thank you.
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ID:	100168	Time/Date:	08:46:30 PM PDT/ 04-11-2012
Name:	shalonda wright
Email Address:	sparmstrong75@yahoo.com
Story:	I am 37yrs old now 11-30-11 i went to the emergency room got medicine, went home slept real good but i woke up like someone hadpoured s bucket of water on me with a red rash across my face and blisters in my mouth i called the er they told me it was a sign of fever, finally after the 3rd try of the er another hospital admitted me it took them a week to find out what was wrong, i was dehydrated losing my vision with fever of 104 and blisters in my mouth then on 12-08-11 i was was diagnosed with sjs and transferred to a burn unit, stayed there for 3wks where i was given all together 5pts. of blood because my red blood cells was being attacked by my immune system. I was released 01-01-12 where i'm still going back and forth to the eye dr, because i can hardly see due to the sjs, i'm also healing from muskoleletal disease, blisters still in my mouth and my skin is all left to heal on its on with God's help. Developing sjs not only affected me physically but mentally also, I have many sleepless nights, i have no funds to be able to see a dr. I'm trying to wait on disability feedback, this is very hard to deal with on my own especially with no answers or help
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ID:	100167	Time/Date:	09:19:02 PM PDT/ 04-01-2012
Name:	Misty Farrell
Email Address:	somebodysangel11@hotmail.com
Story:	Hello my name is Misty, I have a four year old daughter named Mika. Last July my daughter got sick and was diagnosed with pedatric pnemonia, she was given one anti biotic at the local emergency room. Three days later at her doctors office she was still not improving much, so her doctor prescribed yet another anti biotic for her to take along with the first on. We weren't really given any warnings about this second medication or it's possible reaction with the first( if any). Two days later we were back at the local ER because Mika had broken out all of a sudden with a rash and high pitched fever. The doctors told us it was an allergic reaction to the one of the anti biotics she was given. So we took upon ourselves to stop both that night. We took her to her family doctor again two days later for a follow up, by this time the rash had turned into blisters and the fever was back with a vingence, this is where we were told that she needed to be taken to Nationwide Children's Hospital right away( this was by a doctor who didn't normally see Mika). So we went up to Children's and rushed her into the ER where they took her back did tests and examines and then we were told that she would have to be admitted because she had been diagnosed with either SJS or Kwasukis Disease. I had never before heard of the first, and what I knew( very little) about the latter I didn't like. They moved her to an isolation room in the infectious disease unit. The next day Mika couldn't open her eyes because they had swollen shut and was crusted over, her lips was swollen with huge blisters and her mouth was covered in the same blisters, as was her poor little body. It was that day that I learned about this awful reaction called Steven Johnson Syndrome, it was this day that my daughter's life changed forever. We were told that the doctors at Children's had only seen one or two cases ( if that) of SJS and gave us little hope. This being a training hospital, my daughter was constantly being poked and proded with needles and nurses have to hold her down so they could get blood work, IVs , clean out her eyes, ect. She spent five days in the hospital( those were the longest days of my life, and hers) They allowed her to go home with strict instructions on how to care for the blisters she still had and on the medication regamine we had to give her, also how to care for her skin and bath her. It has been 8 1/2 months since the on set of SJS and we have come to find out that there she suffers lasting damage to her private areas and a number of other possible damage done to her little body. She still carries the marks all over her body from the blisters and has scarring in other areas where SJS attacks. She is slowly getting back to where she was before SJS but still has a long way to go. To think that all this suffering could have been prevented kills me. If only I knew more about the meds and what their side affects were. We were never told anything by her family doctor about the risks the drug carried, till the doctors at Children's pointed it out to us.. I am still struggling to find information about SJS and I am VERY interested in spreading awareness about it to every possible human being!!!! No one should EVER have to go what my daughter, and so many others have/ had to go through!!
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ID:	100166	Time/Date:	03:21:27 AM PDT/ 03-17-2012
Name:	Sherri Goldsmith
Email Address:	EmailAddress@notprovided.com
Story:	My husband was diagnosed with SJS two years ago by his pain doctor. Still learning everything we can about this and have told every doctor that he sees about this. I was surprised the number of doctors who do not know anything about this. On March 5 he was admitted to the hospital for a wound on his leg that had not healed. This was after being on medicine to help. He developed a rash around the wound and his kidneys were showing signs of shutting down. He was being seen by a wound doctor and a wound surgical doctor, who he see twice a week now. When we went back to his pain doctor she was asking some questions about how he felted before he went in and while he was on the first round of medicine. He said that he noticed a rash and his lips felt like they were real capped but he was getting some skin when he would put something on them. His pain doctor said he sounded like he was having another flare and his time it was worse then the first. I guess I am wondering what can be done to make doctor's more aware of this. Now we have to be careful because he can not take any medicine that is Sulfate base (his is a lot of drugs).
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ID:	100165	Time/Date:	07:31:42 PM PDT/ 03-12-2012
Name:	Daniel
Email Address:	Whiteseraph86@hotmail.com
Story:	I was 15 years old(in the year 2004 or so), on an ampicillin prescription for an ear infection. About 5 days later, my scalp started to get really itchy. I wasn't worried until the next evening when I itched to the point of drawing blood. I woke up at 5am the next morning, before dawn, and stumbled into the bathroom to find that my body was covered in enormous, blotchy patterns of red. Although I was really worried at this point, I simply went back to bed. Four hours later, my entire body hurt so badly I hardly had the strength to stand, let alone walk. When I did stand, my feet immediately started to swell and turn purple. On top of that, perfect little white circles started to appear all over me. I yelled for my mom, and she flew up the stairs. I'll never forget what my mom's face looked like when she saw me. Since, apparently, I was going to the hospital, I was forced to begin an extremely painful descent down the stairs, and then to the ER. This was just before Christmas too :( After I was admitted, things quickly went downhill. My body swelled enormously, and had turned an ugly red tint on top of everything else. I was given an IV to remain hydrated, but Lord in heaven, I will NEVER forget the nausea! It was absolutely crippling. But I digress. Soon, after lying in the bed, I didn't even have the strength, to take my shorts off. It was so humiliating to have my dad help me. Soon, my throat had started to swell shut, and my oxygen had to be monitored. I didn't have a clue as to what was going on, and neither did any of the doctors for a few days. I remember some specialist with an Indian accent coming in as a consult. I was then told what I had to look forward to - A helicopter ready to fly me to a burn center in Kansas City to scrub off dead skin. I had no idea why, I was just worried about breathing through the night. Oh, and supposedly all my veins were leaking a chemical known as seren. And my white blood cell count was off the charts. At this point I started praying, not knowing whether or not God was going to take me home. It wasn't until after the disease began to regress that the docs decided to tell me it was SJS. They said they didn't want to freak out my parents. It took about a year before I fully recovered, but my skin is still hypersensitive to a lot, more than ten years later. I now know how bad it could have been. Thank God I'm ok.
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ID:	100164	Time/Date:	05:21:17 PM PST/ 02-26-2012
Name:	Thomas
Email Address:	u1050633@unimail.hud.ac.uk
Story:	I am a 19 year old SJS survivor from West Yorkshire. I was diagnosed in school year 5, around the age of 9. The initial cause was never verified. I began with general flu like symptoms, fatigue, headache etc all worsened by dehydration because I was going through that childish stage where I thought that drinking wasn't important. My parents took me to the GP 3 times, where we were told to go home because it was just a cold. Then the rash came and blisters/ulcers formed, and my mum was worried sick. I went to school on the final day (something my mum has yet to forgive herself for), looking pale and ill, mouth caked in dry blood, and I collapsed outside the staff room. I was taken to hospital where it was determined that I was seriously ill. I took the care of several nurses to support the fact that there was something incredibly wrong, and then after a stream of doctors over the course of a week, a specialist finally suggested SJS and I was started on liquid Erythromycin. By this point, I hadn't been able to eat for two weeks, an opthalmologist was called in because my eyes were deteriorating, I was sleeping for most of the day and in pain the rest as the blisters were all over and the ulcers were all in my mouth and throat, there nurses had run out of veins in my arm to put a line in for fluids. A physiotherapist was called in because I was wasting away, extremely thin and no energy. After a slow recovery, and several months rehabilitation into life I was back at school. After affects are something people usually forget. I immediately needed glasses to correct the damage done to my eyes, and I have since never had the same energy or athletic ability (I was a cross-country runner), and have therefore never really been able to put the weight back on fully, particularly in muscle which had wasted away. Over the 10 years I have suffered from Extreme dry skin, Fungal head infections, horrendous razor rash and Folliculitis, easy scarring, athletes foot, excess sweating, extreme fatigue, Sleep issues, beginning depression, sensitive gums etc and recently ALL these symptoms have returned together and I am seeking GP attention this week because having it all is a joke and I can't cope. I have come to accept that SJS has fundamentally altered my skin and mental status, but that doesn't make it any easier. I have never met anyone with SJS and it's difficult to fully explain to everyone I know what happened and the effects I live with everyday; I think people see me as over-dramatic. Yes, I could be a lot worse, but SJS affects so much and so many people, which is why I tell everyone. If anyone wants to email me, please do. Thinking of all who have survived and all who have not. x
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ID:	100162	Time/Date:	05:51:16 PM PST/ 02-16-2012
Name:	Larissa c
Email Address:	EmailAddress@notprovided.com
Story:	“The littlest things can mean the most in someone’s life, even when they aren’t meant to be” Long nights, no sleep Hi, my name is Larissa and I love to play volleyball, soccer, and also flag football. I am a very active kid who is barely home; either doing sports or hanging out with friends. In my free time, I love taking pictures, playing the guitar, reading, studying and also drawing. Music is a huge part of my life, I couldn’t imagine my life without it… music and my iPod are my best friends when no one is around, well I do love my guinea pig more! I am a 15 year old girl who has a heck of a story that you are about to read all about. It all started one day, and this day changed my life greatly, both physically and mentally. This is basically a story of my experience and what I went through for weeks and weeks. I was lucky that I didn’t have what I had much worse. It all started when I developed a really bad cough the night of March 21st, I couldn’t stop coughing at all. I was laying on the couch downstairs so I wouldn’t keep the rest of my family up when they were trying to sleep. I was up until about 2am coughing non stop, nothing could stop it. I tried so many different cough medicines but nothing was working! Cough drops, Buckley’s, you name it, nothing… As the cough worsened, it began to feel like I was coughing my throat out of my body. I barely slept those nights from March 21st to the 24th. I was absolutely exhausted during the days. I had never felt so lazy, ever… I just stayed on the couch all day and school was definitely not an option seeing as I wouldn’t move from my couch. This led to me eventually missing the whole week of school. As the horrible cough went on for three days, it finally started to get better and I began to slowly catch up on my sleep more then I was before. When I woke up in the morning of March 25th, I didn’t feel right at all. I was more tired then I had ever felt before; I felt dizzy and there were strange bubble blister type things on my lips. Then I looked inside my mouth because I felt a sharp pain. Oh my god, I looked in the mirror. What I saw was absolutely disgusting. On my tongue, there were little white patches that felt like canker sores, and other sores lined my gums, the top of my mouth, and the sides. Feeling curious about what was happening, I decided to take pictures of my mouth to show what was happening just in case. I showed my mom and she said that I should just gargle with warm salt water to help kill the bacteria that was doing this to my mouth. Later that day at around lunch time, I went to school to get my work that I missed from Monday up until that day. As I was walking into the school from my car, I felt so dizzy, even dizzier then the after feelings of going on a super spinny ride at a fair. It was also mildly sunny out, not too bad, but it felt as though someone was shining a flashlight directly into my eyes. I could barely see a thing which resulted in me almost tripping and wiping out on my way into the school. As I got into the school, I tried to hide my face as best as I could because there were so many kids in the foyer because of pizza day. Finally making it through that crowd of kids grade 5-9, I slowly made my way up the stairs. When I got to my hallway, I saw my closest friends there and they all came to ask how I was and how I was doing because they didn’t see me all week. They made the statement that I looked “dead” from my pasty, pale, droopy eyed appearance. It was definitely nothing compared to my always tan, big eyed, big smile face. I knew I wasn’t okay, they knew I wasn’t okay. We chatted for a little bit then I let them go down for lunch. I quickly gathered my school work and homework I missed, talked to my teachers, and got out of there as fast as I could knowing that I didn’t want to see anyone. I just wanted to go to bed, I was so tired. When I got home, that’s exactly what I did. After I woke up from my nap, I looked in the shiny, tall mirror. My god, I thought to myself. They got worse, they’re spreading, they’re covering most of my lips. Not good Larissa, not good. Panicking, I quickly rinsed my mouth out again with the warm salt water and went downstairs to have a snack of what I could only eat, jello. Then I made my way upstairs and went to bed hoping everything would be better the next morning. But no, the next morning I woke up shocked again. That morning, the morning of March 26th, I noticed that my eyes were more swelled up then before and my lips began to turn yellowish in colour. Once again being curious and freaked out, I took another picture because my lips were more swollen and they changed. I felt incredibly tired that whole day and slept through most of it. I woke up, had a nice warm shower, and went to the walk in clinic to see what they had to say about what was going on. They observed me, ordered me for an immediate mono test, and a medicated mouth wash for treating thrush. I went for my mono test later that day at a local clinic. I was really nervous because I had never had a blood test done before, but it was all good, it only hurt a bit. I then went home and tried to ear but I couldn’t, so I had to eat jello again… yum? Kind of. A quick bowl of jello to get something in me and off to bed I went. Jesus Christ, my mouth had scabs on it now that were bleeding too. That was what I saw and what my reaction was when I saw myself after getting my eyes unstuck. Man, that was a hard task to do, I took another picture then went downstairs to show my parents. Their reaction was the same as mine, just in shock. As lunch came around, I tried to eat jello but I couldn’t, it hurt too much to do so. The day slowly passed, no different from the other days, just chillin’ at home doing nothing… It was when I was sitting on the couch in the living room when I made a decision that eventually effected my future; should I ask to go to the hospital? I haven’t eaten any proper food for days. Hmmmm, I thought to myself. I asked my parents that question to see what they thought, and their answer was yes. Soon after dinner, about 6:00pm, my dad took me to the hospital and we got in to see a doctor in a room right away. The doctor came in and listened to my breathing and did a blood test. When he told me to take deep breaths, I couldn’t. It was such a struggle to do so. He told me that he could hear wheezing noises and got me to go take an x-ray to make sure nothing was wrong with my lungs. Then after I got the x-ray done, I was back in the little room where I laid on a stretcher for hours before he came back. He examined my lips and the red itchy spots on my arms and legs, that’s when I was diagnosed. I was diagnosed with something called Stevens Johnson Syndrome (SJS), this was something I have never ever heard of… what I thought? It sounds like some kind of horrible disease… the x-ray then came back and we found out that I had a little bit of pneumonia in my left lung as well. He then told me that I was going to be transferred to the Children’s Hospital to see a children’s’ doctor. After our long time being at the hospital from about 6:15pm-9:00pm, we were now off to another hospital? Wow, this was going to be a long night. My dad was texting and calling my mom throughout all the news we were receiving so she packed me a little bag with pj’s, my iPod, phone, and other things just in case I needed to stay overnight. But obviously no tooth brush, ew, I haven’t brushed my teeth for such a long time. We eventually made it back to the Children’s after I went home first and we were placed in a super crowded waiting room with tons of little crying kids from about 9:30pm-12:30am. I fell asleep easily as I could not keep my eyes open at all, no matter how hard I tried. I just felt so out of it and I felt like I wasn’t there and I didn’t know what was happening. Finally, after that long wait, we were eventually called back to an exam room. Doctor after doctor, I lost count. I was out of it. I didn’t know what was going on, I couldn’t think properly. I was getting mad and frustrated. It seemed like there was at least 20 doctors I saw. I was having trouble breathing so I got a mask that made me breathe in like warm vapour to help open up my airway. It kind of helped I guess, well not really, I just said it did. Finally after the doctors left me alone, I fell asleep so fast and it felt like I slept for five minutes then I was waken up AGAIN. This time, there was a lady there telling me that I would have to stay over night so I needed an IV. Oh my god, I was freaking out. As she started to put pressure around my arm with an elastic, I felt my heart beat escalate. I glanced down at my limp hand on the table, I didn’t see any veins but apparently she did. She sanitized my hand and 3, 2, 1… oh my god, I was thinking in my mind. It was the absolute worst pain I have ever experienced. Deep breaths Larissa, deep breaths. I calmed myself down and looked at the IV port in my hand just sitting in there. Ew. Relieved the pain was gone, what she told me next made me want to shoot someone. She said that the vein wasn’t working well enough so she had to find a new one, so she quickly ripped it out of my hand. What?... it was plastic? The freaking IV stabbing into my vein is plastic. I was just so mad at that point, she did the same procedures but this time the pain seemed 100 times worse, probably because I knew what was coming. I was just too frustrated and tired of everything at that point. I was crying this time and began to hear myself grunting because of the pain. I will never forget that cringing pain from the little IV, that’s the worst thing ever. It made me realize how I’m lucky I don’t have cancer or anything, like I couldn’t imagine all those little kids going through painful treatments all the time. Now all we were waiting for was an isolation room to open up so I could go to sleep in a real room instead of sleeping in an exam room on a tiny exam bed. Doctor after doctor, hour after hour, it finally became time for me to move in to an empty isolation room. I honestly don’t remember anything when I was moving except when I went to get an x-ray done because the one I got earlier got lost. But after that, everything in my room and getting wheeled up to my room in the wheelchair became nothing to me. I have no memory of that. Finally after that long night was done waiting from about 12:30am – 5:00am, I woke up and found myself in the room not remembering what happened at all. Um what? SJS? That morning when I woke up, a very nice nurse with a bright smile named Carol came to help me out and introduce herself as she would be my nurse for the day. She got me eye drops, Vaseline for my lips, and always made sure I had an ice cold glass or two of water on my little serving table. When my breakfast tray came, I opened it and realized I couldn’t eat any of it, so Carol went to get me more jello. Later that day, I had a group of about five or six resident doctors come in to meet me and see what they would be dealing with for my stay at the hospital. They were all very nice and concerned about my health status. They would always be asking questions so it was a good thing I had my mom or dad there to help answer for me as I could barely talk. After their visit, I was told be Carol that I was going to be having an appointment with an optometrist because of my vision problems. They just wanted to make sure because in some cases of SJS, the more severe ones, victims can end up being blind. My god, that would be the scariest and worst thing ever. It quickly became time for my appointment, I was so scared but I was feeling confident. Carol came in to get me in a wheelchair and I got wheeled down to the clinic because they thought I probably couldn’t have walked that far. We arrived at the clinic in the waiting room and people stared at me, well I mean who wouldn’t want to stare; a girl with a super pale face, swollen eyes, red patches on her arms, and disgusting bloody lips, people probably thought I was going to die. But whatever, screw them, I don’t care what they think, I’m one hell of a sick kid. The doctor called me back and did a quick, simple test and determined that I wouldn’t become blind and that my vision was alright! I WOULDN’T BE BLIND AND SCARRED FOR LIFE!!!!! That was probably the best news I heard all week. Sighs of relief spread throughout my family and friends; my mom made sure to keep all friends and family updated on how I was doing and what was going on with many emails. I got wheeled back to my room and laid in my bed. I had nothing to do except use my phone, play on my iPod, or watch TV, so me being so exhausted, I fell asleep. I was then waken up after about half an hour by Carol coming to inject something through the IV port in my hand. That feeling hurt and felt really weird at the same time. It felt like someone turned my blood cold and frozen, and that my vein that was being injected into felt like it was going to explode. I had that done every four or five hours, sometimes I was awake, other times I was fast asleep. I skipped my jello dinner that night as I was fast asleep. Finally that day was done. I had never felt as tired as I did then. The next morning, March 29th, I woke up and found myself being moved from my isolation room to a double room. There was no one in there yet but there was soon to be another girl. The daily routine continued and consisted of waking up, taking medicine, putting loads of Vaseline on my lips, and another dose of medicine through the IV. That day was also the day when a very important text message camel it was from my dad. It said that the lab where I got my mono test done had received results, bad news. I tested positive for mono. Well that explains why I’ve been feeling so tired lately… As soon as we heard the news, my mom told one of my nurses and before I knew it, I was being moved back into my old isolation room, all alone. I didn’t mind it actually having my own room, I had my own bathroom and I could watch whatever I wanted, whenever! Now, I for sure had mono, SJS, and a red rash all over my arms and legs. Oh my god, I felt like I was dying. I always fell asleep so early because I was so tired. I was fast asleep when I felt a cold rush of fluid coming down my veins spreading down my arm. What the… it was just the nurse giving me the dose of IV fluid. That had to be the weirdest feeling. Everything with the IV was a bad feeling. That night quickly passed like every other night, and the morning of March 30th, I threw up. I’m not sure if it was the blood going down my throat all night, or just the Vaseline coating my lips. That was a disaster… could you imagine throwing up through a hole in your mouth sealed by scabs, bleeding, the size of a nickel? Not a good experience! That day was getting worse, I could tell and it didn’t help with the fact that I would be in total shock every morning when I woke up. There was blood everywhere, down my face, neck, shirt, pillow, and even in my hair. Ew. As this day past, I grew hungrier and hungrier as I was only eating jello, but not even that anymore. They told me that I was either going to be hooked up to an IV pole and get fluid IV put into me at all times, or I would have to try to eat something else. On my dinner platters, I couldn’t eat anything on them, I tried. Then, I realized there was something there and it was a meal replacement drink. I thought I would give it a try and boy it sure stung my mouth as little drips got past the thick scabbing but I thought it was worth it. So I had about three to four of those bottles a day, they weren’t too shabby at all actually, they gave me strawberry, chocolate, and my favourite, vanilla flavoured. Days and days like this went on and on, it felt like my life would never get better. I was starting to lose hope quickly. April Fools brought happiness The morning of April 1st, that had to be the worst day ever. APRIL FOOLS LARISSA, YOUR LIPS ARE NOW ONE BIG SCAB!!!! I had to pinch myself a couple times, I tried to call for my parents but I couldn’t talk, what was I going to do. Thank god for my parents being there, they took the time to try and understand me the best they could. Yes I did get frustrated and mad once in a while, but I couldn’t blame them, it sounded like someone literally sewed my mouth shut. They got the nurse in the room to see what I should do but then, I coughed cause I couldn’t hold it in any longer, and a chunk of the scab went flying off, I was about to puke. But at least it was gone and I had somewhat of a hole in my mouth I could try to get fluids into! At this point, I was sitting in my side of the room watching tv when the nurse came in with some news. She told me I could probably get to go home! I was just sitting there, in total shock. Really? Looking like this they were letting me go home, I was just waiting for the line “APRIL FOOLS!” But no, she was serious. My mom was at work that morning and my dad was with me at the hospital and we texted her and told her the news. I don’t think she had ever been that happy with me or to see me, ever! HAHA. I think I got home around 1pm that day, wow, wasn’t home for five days. When people ask me what I did on my spring break, I surely know what to tell them. I got home and the recovery process was slow and frustrating. I was just tired of not eating food, sleeping with my shoulders and pillow wrapped in towels, and not seeing my family every day. The next day wasn’t better at all, waking up my mouth was the same scab wise, but this time there was dried blood all over my face. But that’s what I had to look forward to every morning, luckily during the day it got a little bit better. Nothing really drastically changed over the next couple days except my top lip was healing way faster than the bottom! My top lip kept improving but so did my bottom, but it wasn’t nearly as good. April 6th I found myself at the family physician talking about my lips. There was a student doctor there who had studied Steven Johnson Syndrome in his studies in school, but he never actually thought it could look like what I did. He seemed interested so I showed him my pictures on my camera and both him and the doctor couldn’t believe what I had been going through. Finally, my eyes were all better and I could see properly without the itchiness and swelling that i had earlier in this experience. On April 8th, my top lip was really starting to swell up and I had to keep an eye on it to make sure it wasn’t getting red or any worse. And when we thought it was being close to being finished… April 9th was the day I thought I was close to the end of recovery, the top lip seemed like it was 100% healed at this point and my confidence and hope got regained! But when I was sitting on the living room couch with my mom, we were just talking and she was looking at my lips. That’s when we realized something terrible, horrific really. The sides of my mouth were sealed together. At first we thought it was just like scabs or something stuck together, so I would always try to stretch them apart, little by little, and that didn’t work at all. I moved them apart a tiny bit and boom, my mouth was instantly filled with flowing blood. But then after emailing family friends who are doctors and looking closely, we came to the conclusion that the skin healed together because I guess when it was in the scabbing stage, scabs fell off and open skin touched together, and skin on the lips heals the fastest so it must have gotten stuck together. April 12th was a good day, there was only one main scab left and I was going to see some more doctors. That’s when I found out that I wasn’t going to be able to go on my band trip to Edmonton. When I heard the news, I started to cry knowing I was waiting for that since the start of the year. But oh well, health comes first and I was definitely not ready to go on that trip with my lips sealed together. I also heard that the surgery could be anytime probably 2-3 weeks from then. The doctor that saw me was very nice and she as well hadn’t seen SJS like I had it, so her being a curious doctor, took my picture. The thing that makes the picture funny is that you can see a tear coming down the side of my cheek! We told our family friends what the doctor had said about when the surgery could be, and being the nice people they are, they got in touch with a Japanese plastic surgen and he got me in right away to get an examination and even for surgery! It was surprisingly fast, just a day or two later I found myself waiting downstairs in the waiting room in the clinic with other patients as well. Man I was scared, just waiting and waiting there was making me nervous but I guess you have to do what you have to do. “Larissa?” it was my turn to go in now. I hugged my mom and walked back to where I got changed and put my belongings into a locker. When I was ready, I walked through the door towards the surgery areas with my head down, walking slow. I was put into a waiting chair where my mom came back for a little bit and just comforted me. I got my hairnet on and some simple tests done like I did every day at the hospital and there came through the doors before I knew it. It was him, Dr. Hayakawa. He told me to come back through the big heavy doors towards the operating rooms. Slowly I followed him back and found myself quickly in my surgery room. There were about seven doctors there, all smiling and nice about everything. They told me to lie down on the bed, and as they strapped my arms and legs down, I started to shake. I was having troubles breathing and when they were putting sensors on my body, I found myself shaking even more. I remember there was this super nice lady that was rubbing my arms trying to comfort me, she felt like a mom. Just lying there while there were getting everything set up just got to me. But I don’t remember much, I felt out of it even before I got the IV in me. Another IV?! Hell no. But this time it was in my arm where you would normally get blood taken from. Me being out of it already from nothing put into me, I said I wanted freezing before he put the IV in. I had never felt such a sharp pain like that before, what was I thinking. I don’t remember anything after that at all, I must had fallen asleep already within 30 seconds of the IV. The surgery was taking place smoothly when all of a sudden, my eyes opened. It felt like there were towels over my face but there was a little slit where my eyes were but I don’t exactly remember what it was. I remember being blinded by the bright surgery light and I saw and felt the worst thing someone could probably ever see and feel. I saw his hands moving, stitching the thread in my mouth. It didn’t hurt that much so I just tried to make myself fall back asleep. Before I knew it, it was finally done. I remember very faintly being wheeled out of the room talking to the nurses, asking them stupid things and it was probably hilarious. I’m pretty sure I remember asking them if they cut my hair, and how short they cut it. Waking up, opening my eyes seeing the nurse there with a glass of apple juice was good. I had to drink it before I could leave from the Pan Am. Holy, I opened my mouth for the first time in about a month and it felt so weird. The nurse telling me that I looked really good and that you couldn’t even tell make me smile. After a couple of minutes, my parents came in and were congratulating me and were so happy to finally see me smiling again. This was probably one of the happiest times in my life; I could smile and laugh again! For the post-surgery days, my lips were fine, stitches were falling out and the swelling was going down! On April 17th, I went back almost normal to school for the first time in a while! Everyone was SO happy to see me and probably heard somewhat of what I was going through and didn’t bother me and they were just so good about everything. I was starting to get my life back again, I went to the dentist and orthodontist the next day to get my braces changed and teeth cleaned after a month of blood stains on my teeth and not brushing. I was so thankful for my friends and family during this experience. I could have never gotten through it without all the support I had. Parents sleeping over at the hospital, family visiting, friends coming to hang out with me on their Friday and Saturday nights, flowers, balloons, and mainly, hope that I was going to get better and that I just had to keep fighting. They understood what I was going through and never judged me or made fun of me. I would also like to thank them for sending me homework everyday helping me stay caught up. Thanks to them, my grades didn’t slip at all and I ended up acing the chemistry unit I missed! After all the gifts I had received, my brother was jealous, but he doesn’t have a clue to how horrible my life was then and how serious it really was. Now writing this and looking back at my journey from start to finish, I really wonder what peoples thoughts were going through their mind seeing a girl like this wheeling through the hospital, and I appreciate how my parents never said negative things to me about my appearance. They were so supportive buying my $12 packs of six meal replacement drinks (I drank around three a day, so many packs were needed), driving to the hospital and back daily and everything else. I guess what I’m saying is that the littlest things can mean the most in someone’s life, even when they aren’t meant to be. I hope this will never happen to me ever again as it was a terrifying and tough experience. No doctors or anyone know how it happened, so it could happen at any time, but now I would know how to handle it better. Over 5 000 words later, you have just read about my experience dealing with Steven Johnson Syndrome. From the start to finish of this scary experience, I missed around a month of school, my band trip to Edmonton, and most of all, my friends. Now, I have changed a lot, I realized how lucky I was to be alive and now live every day to the fullest, even when I’m not having a good day. I also find that my personality has changed; I am more quiet and timid now more than before. If you would like to see, there are pictures of me that I started taking every day except for a few because I became interested in what was happening to me and how much I was changing every day. The following pictures are not recommended to be viewed by people who are terrified of blood as these images include lots of blood and scabs and may be disturbing to some. Thanks, Larissa - age 15
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ID:	100161	Time/Date:	02:52:39 PM PST/ 02-01-2012
Name:	Axel Diemers
Email Address:	axeldiemers@hotmail.com
Story:	I'm from holland, so my english is not very good. June 2011. I was ill, but strong enough to do some homework. It only got worse then. My mouth hurts very much so we maded an appointment with the doctor. She gave some medicine and the next day my mouth totally broken. My eyes where red and my skin came of. Once again we made an appointment with the docter. This time she didn't knew what it was en send me to the hospital. In the hospital they gave me two pills, not knowing it wil make it worse. Hours past by and its getting worse. I was almost completely blind and my skin came of. The doctor knew it was SJS. I was send to Rotterdam but i was to bad to go. I did go anyway because i have to be alone because of infection. The next day was the baddest one. SJS stroke on the inside and i was almost dead. The eye docter said i would probally become blind. A miracle happend, i recovered en i'm not blind. Stil my eyes a damaged and stil the don't know the cause of it. I lost 10 kg in a weak. I hope if some SJS survivors contact me because no one knows here what i've been through. Kind regarts, Axel
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ID:	100160	Time/Date:	02:01:35 AM PST/ 12-06-2011
Name:	Amanda
Email Address:	yazzyface@gmail.com
Story:	My name is Amanda, I'm 20 years old and I was diagnosed with SJS when I was 15. The drug that caused it is Lamictal. My symptoms started on Christmas Eve, and I went to the hospital at 5am Christmas morning because I was having trouble breathing, my lips and throat hurt very badly. I was sent home without a diagnosis, and returned that night because I was getting worse. Someone finally caught on that I was actually sick, and I was transferred from SWWMC to Legacy Emanuel, in Portland. I was in pediatric ICU for 1 week, I don't remember what happened for that week, but I woke up in the burn unit and all of my skin was covered in bandages. A week later, my eyes got messed up. It was the worst pain in my life, since the doctors were weaning me off the morphine at the time. I was then taken to a normal pediatric room, where my most of my skin healed, but I still had problems with my lips not healing, they would be shut with blood, and whenever I opened my mouth my lips would bleed all over the place. After a total of 3 weeks at the hospital I went home, I still couldn't see, my lips were still messed up, and my hair was falling out. I was told my eyes would likely be back to normal in two weeks. After I was sick, I lost all my nails twice, and still have problems with them today. I lost a lot of hair, but the hair loss is significantly less now. There is still scarring on my lips and tongue, and my vision got mostly better, but now I have very dry eyes, and eyelashes that constantly scratch against my corneas. I am very sensitive to light. I went through a lot of eye doctors before finding one I like a lot. He gives me lots of free eyedrop samples :] Thanks for reading, sorry my story is so long, I didn't mean it to be.
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