I was diagnosed with SJS/TENS in July of 1977 when I was nearly 7 years old following an allergic reaction to phenobarbital. At that time, I can remember even at my age that my pediatrician had to scour medical journals and anything he could find on the treatment of what was then only called SJS. Now, with "burns": covering more than 60 % of my body, It would be TENS. I spent two weeks in the hospital, hooked up to IV's, wrapped like a mummy, and enduring thrice daily "salt baths" to cleanse the wounds. Even on morphine and being so young I can remember the pain of those baths. There was "talk" during the ordeal; of me being taken to the "Burn Unit" in Augusta, GA and being treated there to which my parents vehemently refused to do. My pediatrician had managed to "catch" my case in it's early stages diagnosing it for what it was, which I consider a miracle for the day (1977) He was a hard nosed pediatrician who wouldn't take no for an answer and the nursing staff hated but was probably the best thing for my treatment trying new things, like eye drops constantly, shedding the sloughing skin 3 times a day, He brought in specialists from out of state. Ophthalmologists, Dermatologists and was a demanding man. I am sure I owe him my life. After being released from the hospital, I was photographed in many medical journals and spent a lot of time traveling to specialists out of town.I was required to wear long sleeves, hats and glasses in the middle of August in the south. I wasn't allowed to be in the sun for in amount of time and medications were given to me warily. Being only 7 when I was diagnosed, it wasn't until I was older than I began to hear stories and began researching it online and viewing my old medical records. I am 42 years old now and have always had great vision. There is scar tissue I can visually see on my inner eyelids so I know it effected me there but I am positive his quick thinking saved my eyesight. I have numerous "moles" (lesions I guess) leftover as scar tissue mostly on my back with some markings on my face and arms that I was told not longer after being released from the hospital by physicians at Emory University in Atlanta that the lesions should never be removed although I am not sure why. I can remember a lot of things about my time in the hospital even at my age and the pain and suffering I endured. It wasn't until I was much older than my parents sat me down and talked to me openly about that time. I am amazed now to see how lucky I must have been back in 1977 since even now in the 2000's we still have physicians that have never heard of this or are not well versed enough in their medical education to spot it for what it is. Ironically, I work in a pediatric ambulatory clinic now that teaches a good bit of the Southeast"s pediatricians and have discussed my SJS/TENS with the Attending Providers here while the Residents look at me like I grew two heads the Attendings who have been practicing in my local hospital for a long time haven't seen another case of TENS while they say they have seen some very minor cases of SJS. I had surgery a few years ago for a hysterectomy and the Anesthesiologist became so curious about the SJS in my medical history he pulled my medial records from Microfiche. My thoughts and prayers are with all the families who have suffered from this. I am very thankful I had a hard nosed "mean" pediatrician who the nurses hated and demanded certain treatment for me.

Hello everyone, a close friend of mines is dealing with this same thing and I’m hurting so bad because he won’t allow me to help. His pride won’t allow anyone to help him. I’m trying to get him to admitt his self into the hospital . He has locked his self inside his house. Please I need help he is so afraid to trust another doctor because they have done this to him trying to treat him with grout. They gave him a medication called alluropie. This has burn his lips and body parts.pleasw if u can help please someone help me before its to late. I don’t want him to die.

My mom was given anti biotic for a pic line infection she ended up on a vent and dialysis then the dialysis had failed due to her bp not staying up. We had to make the decision of taking her off the vent she was suffering so the doctors say and it was hard I'm only 20 I miss my mom and I think that my mom would have survived I guess I might just be grieving. My mom had a lot of other health problems obesity, diabetes, heart problems, and a history of cellulitis. This all happened in September of 2013. The nurses say she was healing nicely but the doctors said she would not be her self after every thing . They had her hooked up to a catheter and I myself think the catheter was leaking and I really regret being part of the decision of taking her of the vent they diagnosed it as sjs or tens

Hello I contracted SJS in Sept of 07 was given Bactrim and Keflex, was sent to the burn unit in PHX Az at the time was given a very slim chance of living since then my feet are scaling and I get massive pains in my stomach my health has gone down hill and I get blisters all over my body. When in the hospital a medical company visited me and tried telling me the SJS was in my head. I went to a lawyer and was told I had no case since people with SJS dont survive. And for people who say you cannot relapse your dead wrong I relapsed twice already and im on Clindamycin which holds it at bay but once I stop. My body seems to flare up. Has anyome had th err same affects as me? Im interested on hearing your stories of this infection.

I think SJS is much more prevalent than is reported. I fought with Drs for several years over sensitivities to many meds on the list. I deeply believe one reason for that is that with some people it attacks the nervous system and brain. I was being advised that I had Parkinsons, MS and early onset dementia several years ago and was yelled at for not taking my meds. Mind you – the little backwater hospital hadn’t done any tests, just diagnosed due to a 15 minute exam. Blisters in my mouth were put down to poor nutrition – no tests. Blisters in my throat were viral (because a strep A showed negative – only test they did). Dry eye was diagnosed as allergies. I could go on. I stopped all meds and within 2 years was university tested at an IQ level in excess of 135 and no signs of tremors or dementia.

STILL having trouble getting doctors to listen to my concerns about medications – they keep trying to prescribe meds on the list I gave them. I’ve been told that SJS is SOOOOO rare that I probably don’t have it. Despite a three day hospital stay and two emergency room visits.

I am angry and frightened that I’ll be given a known trigger if I ever end up in the emergency room. They don’t listen when I’m alert. Think they’ll listen if I’m unresponsive?