Comments
  • J. McCawley April 20, 2010 at 11:29 am

    FYI! There are more female cases reported than male.

    We track cases of SJS with our SJS Survey form and the majority are female.

    • admin April 20, 2010 at 2:23 pm

      Hi J. McCawley, Thanks for your comment–and for the valuable information on your site, sjssupport.org. I got the info on male vs female incidences from the emedicine from WebMD page on Stevens Johnson Syndrome–and they have a fairly extensive list of references there. I'm not sure how your tracking system differs from the methodology or sources of SJS reporting they have, but clearly they do differ. There is also some conflicting information out on the web on what segments of the population SJS affects. The emedicine info indicates that for SJS, "a Caucasian predominance has been reported"–however, there has also been quite a bit in the media on how SJS affects a greater percentage of Asians than Caucasians. Regardless, it can, as you've indicated at sjssupport.org, affect ANYONE. Thanks again for your comment!

  • Marcia M April 23, 2010 at 8:41 pm

    My mother is suffering from SJS due to a severe reaction to Azythromycin Z-Pac. She was hopsitalized and diagnosised in November 2009 due to this drug. While she was in the hospital she was given Vancomycin. When she came home, she had a reaction to that as well. Her face was swollen, eyes closed almost completely shut. It was so close to the brain that the doctor said it would cause immediate death if it reached her brain. Her neck looked red scalded flesh. Now, her scalp is "white with scales" all over it, and also red blotches. It is itching her to death. The burning, itching and pain is affecting her life and her mental condition.

    I have been trying to get an attorney to take her case, but for some reason no one will take her case. I do not understand the need to keep advertising "IF you have been injured or know someone who has been injured due to taking "such and such a drug" and has been diagnosised with SJS, then call an attorney right away." What good is it to have SJS, been diagnosised with it, could have died from it, may still die from it because of the pain and agony the person is going through, if she does not have a case.

    What does it take to qualify for a SJS case – DIE. If she was to die would she have a case then. Evidently not, but I would like to know the real reason she does not have one. She suffers from ALL THE THINGS THAT ARE BEING DESCRIBED IN ALL THE WEBSITES ABOUT THIS DISEASE. But, she does not qualify for one. Someone please tell me why she does not, when she is suffering. I cannot even find a doctor who will treat her, and I am at wits end because I cannot help her. Any answers to all my questions would be greatly appreciated. Thank you.

    • Ernest July 23, 2010 at 7:14 am

      Hi Marcia, i'm so sorry about your mother God bless her & your family. Marcia I'm also a SJS/TENS survivor since Feburary of 2005, & yes every lawyer out there advertises to help but no one was able to help me.

      I was burned by the antibiotic called Bactrum and on the sheet that you get when you pick up your pills at the Pharmacy under the side affects it did say there that it may cause SJS/TENS, that alone was enough said to stop any legal actions towards any one.

      So you might want to look at your side affects on the medication that your mother took, I know it's hard to find help as all I was ever able to get was Social Security and no more. Now for the past 5 years it has been very hard to find Dr's that will see you as soon as you mention SJS they just slide right out of your life.

      Marcia I wish you the best of luck I pray that your Mother keeps fitghting and doesn't give up, cause once were survivors we have to fight every day of our lives.

      • monica gibbs March 26, 2011 at 7:34 am

        HI MARCIA I hope all is well i am sitting here in tears because my mother went threw the samething around the same time i almost felt i was reading my on story.IF you could reply to me by my email which is ggibbsmonica176@aol.com I would really like to talk to you one on one.

      • Christi Martin March 1, 2014 at 3:09 am

        My name is Christi. I was given Bactrim for a spider bite. I also was given the three in one flu shot at the same time. It only took fifteen minutes after one Bactrim to start my living hell with SJS. I have a very difficult time finding doctors that will see me. I have permeant health issues because of this disease. Kidneys,eyes,skin,intestinal and I could go on and on! I'am preaching to the choir so to speak ! No one can ever know what the pain is like unless you have walked in our shoes just for one minute!

    • JEAN June 27, 2011 at 11:38 am

      OMG! I WENT THROUGH THE SAME THING AS YOUR MOM, I WAS BITTEN BY A SPIDER, BROKE OUT IN HIVES, TAKEN 2 A HOSPITAL AND WAS MISDIAGNOSED WITH SHINGLES. GIVEN ACYCLOVIR 800MG 2 BE TAKEN 5 TIMES A DAY. COME 2 FIND OUT AFTER NUMEROUS TEST, AND DOCTORS, I DIDN'T HAVE SHINGLES, AND WAS DAMN NEAR DEATH WITH SJS-TENS. YOU ARE SO RIGHT ABOUT GETTING SOMEONE 2 TAKE THIS CASE, I STILL DON'T UNDERSTAND, OR BELIEVE IT. I LOOKED LIKE SOME KIND OF CREATURE WHEN IT HAPPEN. I'VE WRITTEN 2 THE MEDICAL BOARD, AMA, FDA, NEW ENGLAND JOURNAL, OBAMA, GUPTA, CNN, AND ABOUT 30 ATTORNEY'S TO NO AVAIL, I'M AT MY WITS END ALSO, BUT I'LL NEVER STOP FIGHTING CAUSE THIS WAS DONE 2 ME, I DIDN'T DO IT 2 MYSELF. THESE(SOME) DOCTORS RUIN YOUR LIFE, AND WONT STEP UP AND FACE WHAT THEY'VE DONE 2 YOU. ITS AWFUL THE WALL OF SILENCE THEY HAVE FOR EACH OTHER. NOW I'VE STARTED 2 CONTACT ATTORNEYS OUT OF STATE, WAITING FOR ANSWERS NOW, U MAY WANT 2 CHECK THAT OUT OK, HOPE YOUR MOM-GETS BETTER SOON.

      JP

    • Anonymous October 27, 2012 at 4:56 pm

      I had the same case and nothing was done.Need to live with the complications after it for the rest of my life and Im only 19.

  • Yvonne Rector July 13, 2012 at 4:46 pm

    Our son got sick with what we thought was a sinus infection in Nov. 2010. Took him to the emergency room at the only level 1 trauma hospital near where we live. Within 6 hours of being admitted, he was so sick, the doctors gave him a 5% chance of living thru the night. We were never given a diagnosis as to what was really wrong with him. First it was meningitis then it was pneumonia, then sepsis poisoning, then mrsa infection. Within 24 hours of being admitted to the hospital his kidneys had shut down and his liver function had decreased. The hospital was given a list of all the antibiotics he was allergic to as well as other things that he was allergic to. He ended up with gangrene on his feet, his legs, his nose, ears, top lip and fingers; all of which ended up being amputated. He looks like he's been in a fire or car wreck. He ended up having to have multiple skin grafts over 75% of what was left of his body after all the amputations. He was in the hospital from Nov. 11, 2010 thru March 28, 2011, then rehab for 2 weeks, in another hospital for 3 weeks for wound care, then rehab again for a month. He came home on May 31, 2011. He now has IVIG infusions every 3 weeks. He's had cataract surgery on both eyes. He also has no immune system now. He didn't have much of one to begin with but because of all of the antibiotics he was given that he was allergic to he's in worse shape than ever. I have contacted attorneys all over the state of Tennessee, part of Virginia, and Georgia and cannot find one to take his case either. We feel your pain since we're living it every day. Keep fighting like we're doing.

  • Anon December 5, 2012 at 11:49 am

    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.

  • Trenace March 18, 2013 at 1:56 pm

    My aunt died from SJS a few months ago. I am not sure is they knew it at the onset or not

  • Rachel July 7, 2013 at 11:14 pm

    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.

  • Kat Jordan September 18, 2013 at 10:31 am

    A friend of mine's mom is going through this right now, it took a determatologist to recognize that she had SJS, after a couple other doctors weren't exactly sure what she had going on. She is stable right now and expected to recover but that's after being put in to an induced coma for what they say could be up to two weeks to keep her from experiencing the pain, etc… It stinks that medicines can have this horrible side effect on a body.

  • Matt October 7, 2013 at 9:41 am

    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

  • The Motivator January 28, 2014 at 11:55 pm

    A person who played a big part In my life as I was growing up is suffering from SJS all I want today is suppliers should put an little in print on the medication I mean does anyone really find out if an elderly person is allergic to this particular medication or do they just give it away thinking that it's fine it doesn't matter well that's kind of issues with people nowadays not giving a crap about elderly people thinking their a waste of NHS money

  • Tom March 3, 2014 at 5:01 pm

    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.

    tompeticolas@yahoo.com

  • Wendy June 16, 2014 at 4:54 am

    I believe that Steven Johnson Syndrome must blister the brain tissue. Does anyone have proof of this? My family member had it at just 18 months old, he is now 36 and has had hallucinations, visual and audio, Night terrors, and delusional episodes all his life since the SJS. when his baby teeth came in they were black, the blistering had killed his teeth. He was blistered inside and out. Please respond if you know of any long term effects of SJS which relate to psychosis, delusions or hallucinations. Thank you

  • SF September 30, 2015 at 5:19 pm

    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?

  • shauna kapoor January 22, 2016 at 4:42 pm

    i am currently in a state of health failing crisis and I need help please! I got a speeding ticket for 3 over the limit and didnt pay it off. then I didnt show in court or know my license got suspended. I got arrested for a bench warrant on not going to court on the ticket. they gave me a personal bond with gps tether til court. its a new rule in flint that if they release anyone on a personal bond they must have a gps tether on their ankle. 4 days after having the tether put on I woke up to a burn on both ankles due to the tether being to hot. it had burned thru the skin causing contact dermatitis and cellulitis. then it spread to the blood. my ankles and feet tripled in size and I was hospitalized for 3 days and diagnosed with sjs. 4 and a half months later I have lost all vision in left eye…have only half vision left in right eye. puke every day. lost over 60 lbs. fevers. fatigue. very sick like the worst flu every single day. have been stuck in bed since september 28th 2015 as I cant stand longer than 5 to 10 seconds before I black out then fully pass out. I cant get anything to help it get better. I feel like Im dying slowly and cant make it stop. forgot to mention that I only pee once daily and poop twice per month. have no help around me and havent been able to shower since september as I only have a shower no bath and cant stand long enough before passing out to take a shower. I hurt and cry non stop and am terriffied of dying yet Im so miserable that Im already ded stuck alive. can you help me? how can I stop the passing out or the flu feelings? please….Im down to a hundred and six pounds and still dropping.

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