My son tyrelle turner, is now 12 years old and we reside in Jackson, Tn. At age 10, tyrelle had a life threatening allergic reaction to medication he was prescribed for a sinus infection, bactrim. He began taking the sulfa med march 9, 2012 and about 5~7 days later he started to have symptons of a headache, fever, bodyaches. I took him back and forth to drs, clinics hospital and they continued to misdiagnose him, saying it was because of the sinus infection, and to finish the bactrim, then it was strep, altho he was negative for the test, even saying he had scarlet fever and releasing him with a 104 fever. This went on from march 18~24, and on the 24th, when I took him back to the ER again that evening, I finally refused to leave without them telling me why my son could barely breathe, wouldnt eat, drink, or really talk, why he had blisters all over his mouth. They didnt know, so they sent him to Lebohneur by ambulance in Memphis, Tn and finally after doin a biopsy they informed me my son had sjs, but couldn't help him there. They ended up flying to Little Rock, Arkansas to their Childrens Hospital, which contained a burn unit that could possibly help tyrelle. By this time the sjs that only covered 30% of his body, now covered over 70% of his body (tens). When he reached the hospital, the dr informed me that if he didnt start getting better within 72 hours, he would probably not make it. After plenty crying alone there with my son, and plenty praying after they put him on life support, slowly he started to get better. He was put on a feeding tube along with the ventilator, and other machines, but on April 10, he was released with strict instruction since it had affected so much of his body, especially his face, neck, back, chest, and hands. He was not allowed to complete the remainder of the school year, and has to see an eye dr as well. (To add insult to injury, my job at Apria Healthcare termniated me almost immediately after coming home from Arkansas with my son, even tho they werent paying me while i was off.) He went to see a dermatologist, whom informed us that his scars could be permanent since they had affected so much and were so deep. But i am proud to say today, that the dr was incorrect, and my baby's face has cleared up remarkably, his body still bears scars, but his face made him self confident. He is excelling in school, in all honors classes making all A's, 1 B in his elective class, he is also doing phenomenal on the athletic level. He was mvp and captain of his football team last year, and this year his 1st year playing for his middle school he scored 4 touchdowns his 1st game last Saturday. I am so proud of him. Thank u guys for supporting us. The Stevens Johnson Syndrome Foundation give us a chance to be heard
Sincerely with love,
My name is Jeri-Ann, I am currently 25 years old, I was in the hospital from October to November of 2011, and this is my story.. In the summer of 2011 I was put on an anti convulsion medication that I never took before, thinking the med was actually suppose to help when it only made things worse from there. My best friend was on the same medication for years prior so I thought for sure it would be ok for me. Almost every week after taking this I was in and out of different hospitals. I knew something was wrong with my body, I didn't feel right at all. I didn't think anything of these symptoms because I was always a sick child; I practically lived in the hospital. But this, this was different; almost every symptom I had prior was more severe than usual. I knew something wasn't right, so in and out of doctors/hospitals, always being sent home with different meds, by the time they caught this awful disease that was taking over my body, I was on 10 different medications, which by then increased the likelihood of so many other issues and side effects I could get. I had no one following my care when I was on all of these meds. Whenever I was seen with different symptoms, I kept getting different prognosis's; viral infection, sinus infection, the flu, and even my last visit to the ER they thought I was on something, and thought I was crazy because I kept slurring my speech, and because of my history they couldn't be bothered, they sent me home for the last time, then I developed a rash, my mom looked up my symptoms and the med I was on to see if there was any relation, and that's when we came across Stevens Johnson Syndrome. Immediately my mom called 911, because I couldn't breathe, everything hurt, and the rash just kept getting worse over time.
I do not remember much about the transport and some days of my hospital stay are vague, because I was in a medically induced coma for 3 weeks. I remember waking up from all the horrific nightmares, pulling out tubes, kicking and hitting nurses and doctors. I was in the ICU burn unit for 3 weeks and the last week I got sent to a regular room, had a relapse and was back in again. Even after I was sent home it was too soon and I was back In there a week later. My first week was touch and go, they told my family I may not make it the first week because of how fast I went downhill. It was like all of a sudden as soon as the rash came everyday was worse and worse, no one expected this, one day I was fine and the next day I was on my death bed. Oh what a nightmare this was, but I pulled through, and they said it was a miracle of how serious I was, blisters covered just under 80% of my body. It started out as SJS, and overnight it turned into TENS Mostly because internally I suffered more, I had tubes sticking out of nearly every part of my body, and I'm so glad I was wrapped so much so I didn't see how I looked, but I still remember those horrific moments, which I now suffer from PTSD.. I did before SJS/TENS, but for a whole other reason. I was told I may have to go to rehab when I left, but I recovered so fast, they were surprised how good I looked, even now you couldn't tell I was sick, but little do they know I have to face some lifelong issues that I wasn't ready for.
As of this year 2014 I currently have about 10 doctors I have to see all the time, but it has gone down over time. When I was first released from Brigham and Women's Hospital of Boston, I had nearly 29 doctors and specialists. I was in the doctors every other day, now it's about once a week. My tear ducts were scarred shut, so I do not produce tears and use eye drops every other minute, and special contacts called PROSE that I get from Boston Foundation for Sight, and I have to change my contacts at least 10 times, usually more on a daily basis. I only had 3 nails that grew back completely, but are still so fragile, and one that grew back all warped, my finger and toe nails will fall off and bleed at random, and I also have really bad joint and muscle problems, arthritis, asthma, and fainting spells. I am allergic to so many things now that I never was before, and I get sick so easily because my immune system was weakened drastically after SJS. I also cannot work for longer than 2 hours at a time, due to all of my internal issues, no one understands, I've been bullied because of my disability. But I have overcome the odds and I would not trade this life for anything because everything happens for a reason. I believe my reason was to help others facing some similar challenges and so much more, I love helping others and “I get inspired from seeing larger than life.” As I was told I would never be able to drive, go to school or live a normal life, but what is normal? This is my new normal and I have finally come to terms with it. Although it's harder than I could have ever imagined and some days are worse than others, what always keeps me going knows that it could be worse! I am thankful for the amount of love and support I had through my journey, some people don't even have this. Although I have lost so many friends because if my limitations and this horrific disease, I have gained so many more. I am so blessed to have been able to meet so many wonderful survivors and their families as well; it helps drastically to know that I am not alone.
My name is Valerie and I am 9 years old, and in the 4th grade. I live in Michigan. I had SJS in January of 2008 when I was 8 years old. Valerie
This is Matthew at age 5. This photo of Matthew was taken 1 week before he contracted SJS from either Motrin and/or Zithromax. The day after this photo he became ill with an ear infection and high fever. 4 days after he started the Zithromax he came down with symptoms of SJS. Thankfully the wonderful doctors at the Hunterdon Medical Center in Flemington NJ were familiar with SJS sent him immediately to the Children's Hospital at St. Peters University Hospital in New Brunswick, NJ. Matthew is doing wonderfully now... Thank you for this wonderful website. Matthew is very happy to know that there are other children out there that he can relate too with his experience
This is Shane Quandt the year after he spent one month in the Nebraska Medical Center Burn Unit with TENS. He was 3 years old and his TENS was caused from Children's Motrin. He was very lucky and the only lasting side effect besides skin scarring is that his gums have receded and he will require skin grafting from his palate to his lower gums for more teeth support. This was caused from the massive loss of mucosa in his mouth and
esophagus. He is now in kindergarten and is a constant reminder of the most important miracle we have ever witnessed
Derek is a 17-year-old high school junior who got SJS in February 2005 as a result of a combination of ibuprofen and mycoplasma pneumoniae. He spent one week in Children's Hospital of Pittsburgh. Derek enjoys playing ice hockey, fly fishing, golfing, and hunting. He has a promising future ahead of him as he begins making application to colleges in pursuit of obtaining his goal of working in a conservation/fisheries management career
This is a picture of Miranda Warr. Miranda had SJS last August at the age of 4. She had a reaction to antibiotics. We are grateful she has had no long term effects
Jeremy was seven years old in 2004 when he got SJS after taking Bactrim for a staph infection. He spent three weeks in the Children’s Hospital of Austin. He has some tissue damage in his eyes, and learned how to put in his own contact lenses when he was only eight! This photo was taken the year after SJS when Jeremy served as a Miracle Child for the Children’s Miracle Network to help raise funds for children’s hospitals. Today Jeremy is in middle school and doing great. He enjoys tennis and computer games.
Six year old Ian from Mexico spent 2 months in the intensive care unit in Galveston with SJS. Pictured here with his little brother 4 year old Andre enjoying a good time off the cost of Cancun!
Hi! My name is Caleb McCourry and I am 10 years old from Norman Oklahoma. I had SJS in October of 2007. I got ill with what the doctor thought was Mycoplasma Pneumonia and was put on Zithromax. I started to show signs of SJS after 5 days but was misdiagnosed by my doctor fortunately my mom researched my symptoms and came up with SJS. My parents took me to The University of Oklahoma Children's Hospital where they said it was indeed SJS. I was in the hospital for 17 days. I am well now and have no side effects thank goodness. I like football, playing with my friends and riding my bike.
Hi I am Nicole chapman. I was diagnosed with SJS/tens at the age of 6. September of 1993. I spend 21 days in the Burn center. My skin was covered with pig skin to protect it. I now have glass tear ducts; I have many other side effects to do the fact of SJS. Including lots of Joint problems, The cause of my sjs is unknown. I have had about 36 surgeries mainly eye surgeries, ear, 1 knee surgery. I can’t thank the sjs foundation for what they have done for me. When having a bad day Jean is always there to talk to. Julie is a true inspiration.