One Woman's Stevens Johnson Syndrome Hell

I suffered SJS on April 30, 2013 and spent 15 days in the hospital 11 of those where in a burn unit I am in now trying to raise awareness about SJS if you are looking for support go here sjsupport.org Jean McCawley is vary helpful she has helped me and my family since I got home from the hospital. now for my story, On April 22, 2013 I was to start a new medication one I had never taken before Bactrim the vary next day my groin began to itch real bad so bad it was hard to sleep so I called my doctor he said if it dose not get better in a few days call me. Well it did not get better so I called him back and made a visit to his office on April 26, 2013 where he tells me it is a bug bite and puts me on a six day steroid and sent me on my way. well over the week end my groin had gotten worse not better and on Mon the 29 of April I went back to the doctor as the skin in the groin had started to open and puss at this point there was no rash any where else on my body so he took a skin sample and told me to continue the medications and come back in 2 weeks. On Tues. April 30, 2013 I work up not feel well sort of like the flu but I have never had the flu and it was the wrong time of year for it so I went to work and around 10 AM the symptoms got worse my groin was swelling and I really felt ill so I called the doctors with no call back, so U called the pharmacy they told my to stop the medication the Bactrim and to start taking Benadryl 50mg every 4 hours but I was still 2 hours from work before I would be back to my car to go home. I get home at 1PM start the Benadryl and fall asleep I wake up at 5 PM and take the next douse of Benadryl and start to eat dinner, then it happened the Blisters start in my mouth and it was like they just came in a matter of seconds my mouth was full of them so off to the ER I told the doctors in the ER what I had but they would not listen so I was put on observation for the night. On May 1st 2013 my doctor comes in and says we are going to keep you one more night but you can go home in the morning. Well this did not happen as at dinner time 24 hours from when the blisters fist started I was having trouble swallowing and talking so I was then moved to ICU the nurses and my doctor did not know what was going on then my breathing became labored ad they talked about putting a tube down my throat because they could not give me any meds to help open my air way as my heart rate was to high thankfully my hart rate came down and I got the treatment. May 2, 2013 the diagnosis the doctor came in and said you have SJS and tomorrow you will be taken to a burn unit. May 3, 2013 I finally thought they now know what I have and they are sending me to a hospital that can treat it or so I thought at 6PM the ambulance that is going to take me to the Burn Unit arrives and in 30 min. I am at the burn unit with more questions than answers. I find out that they have no treatment just supportive care I also find out and this point how bad it is I have 26% body coverage and at this point I am in the crossover stage of SJS to TENS. They clean me up and put me in their gowns and then I sleep. May 4, 2013 the morning starts off with blood work as will every morning till I go home then a bath the best part of my day. I ran fevers every day also my highest one was on May 5, 2013 of 107F I do not even remember this day nothing don't know if I took a bath if they took blood if I had my breakfast or not I was on a liquid diet the whole time I was in the hospital had for one month at home I did not loose my eye sight I now suffer from dry mouth dry eyes and difficulty in swallowing I want other test done but my doctor will not let me have them done so at this time I am getting second opinions so I will see how it turns out but SJS is a part of my life and a part of who I am.

I contacted SJs in June of 2011 from post meds. I was in the hospital for 31 days of hell and cabin fever, suffered from 2 heart attacks and full renal failure, and have been told due to the internal damages done, this is terminal. I have had small breakouts since then, but thankfully not sending me back into the hospital. I am now clinically blind in my left eye, and suffer from severe edema issues due to the kidney damage. I continue to do my best to support my family but it is harder and harder every day. As in Relay for Life, SJS awareness needs be better widespread as it is a very dangerous disease.

I had SJS almost 4 years ago. I am still having an extremely difficult time. My self esteem and self conscious about my appearance has plummeted. I do not have a good support system. Please, are there any kind of support groups out there? Any resources or some type of help?

A close friend of mine is trying to recover from this Now. I want to help her...hers was from prescribed Lamactil / lamotrogine, She is in Australia, Unfortunately though 3 medical professionals let her down as she went firstly after two weeks of being on a low dosage she went back to her physician complaining of the flu like symptons mentioned, her physician increased her lamactil dosage to one tablet a day!, she then went back to another physician..still unwell 4 weeks later, this one referred her to the hospital concerned about a rash starting to develop on her back, the hospital after keeping her waiting for 2 hours, finally looked at her, said there was no need for concern and sent her home, a short time later she was admitted to intensive care, they did not expect her to live.. she lapsed into a coma for 3 months, but she has survived..she has all but lost her vision in one eye and the other is severely damaged. Her entire body is burned and scarred inside and out, she is extremely thin and every day is a painful struggle...You all know how it must be for her... I am interested in the ladies comment about a contact lense that mositurises the eye, what is this..who does this treatment we haven't been offred this here. Also the lady Linda that is in Australia, i want to try and gather support or as much inforation to assist my friend as possible
Please anyone tell me all you know that can help my friend to gather strength and keep going on!

I suffered from SjS in 2010 after a physician gave me Verpamil as a preventive for high blood pressure. I did not have high blood pressure. My symptoms began with eleveated fever/chills. Soon my body was covered in dark red. Later all my skin turned blue, then purple. Fluid from my eyes ran down my face and blistered my skin. My eyes seemed to have a film over them and I was swollen all over. The fast thinking of a smart physician and the good work of the care givers at the hospital were my "saving grace". The skin inside my nasal passages, my mouth and my intestines sloughed off, as did all of the skin on my body. I am in the process of losing my hair. I have determined that I will do all I
can to completly overcome this. I do not take any medicine, as the doctor told me in the hospital I was a healthy person according to my test. My advice is to not take any medicine if you don't have a disease.

You are an inspiration to all of us!!!

I suffered a similar experience in February last year whilst I was in hospital following a Liver transplant. I spent over four months in hospital and was treated very kindly and very well by a wonderful medical team. I was fortunate to have a young Doctor recognize SJS straight away. I live in Australia and am campaigning for the recognition of this disease and to increase awareness.

I wish this lady well for her future.

Linda.