Stevens-Johnson Syndrome

At age 9, I had SJS (over 30 years ago). Over the years, giving medical histories have been 'fun', as it usually drew out questions from medical staff. However, it isn't that big of a deal for me. One day, for giggles, I googled it. The number of hits astounded me. There were websites, foundations, etc.

I wonder if SJS is becoming less rare, or is it the ease of information these days that makes it seem to be more prevalent?

FWIW, no cause was found for my occurrence. I simply keep my exposure to medications to a minimum.

reply to post by Viking04

Stevens–Johnson syndrome (SJS) is a life-threatening condition affecting the skin in which cell death causes the epidermis to separate from the dermis. The syndrome is thought to be a hypersensitivity complex affecting the skin and the mucous membranes. Although the majority of cases are idiopathic, the main class of known causes is medications, followed by infections and (rarely) cancers.

Link
en.wikipedia.org...

If you format a post this way, Viking, it might be easier for other folks.

Just a suggestion, we all have to learn.

Wow that sounds like it had to hurt. How long did you have it? I have never hear of this syndrome before. Could you maybe give us some insight on what it was like having it? I think more people would read that since you have personal experience and knowledge when dealing with this.

I should state that these memories are of a sick nine-year old boy. Sometimes we forget that our memories are colored by who and what we are at the time. To that end, my memories may be incorrect, or I remembered only the mundane.

Second, the intent of the original post was not about 'me', rather about what I seemed to see as an increase in the incidence of the disease. As most seem to not be familiar with it, I will relate my memories (as above).

Finally, when this happened, Toxic Epidermal Necrolysis, or TEN was not a separate, but related diagnosis (so far as I am aware). As it was explained to me (remembering that this was the way it was explained to a nine-year old), there was an 'internal' and 'external' form. I had a few areas of TEN away from openings in the body, but they were few. Luckily, did not have TEN, and did not lose my skin.

Things started in September. I had just gone through the usual autumn/first days of school cold. As an ordinary 4th grader, I had received the usual OTC meds. One Saturday morning, I woke up early, feeling that my mouth was filled with small water balloons. I woke my parents, who were naturally startled. At this time, sores had begun to erupt on my lips and the whites of my eyes had begun to redden. Luckily, the on-call pediatrician had seen a previous case and had me admitted immediately.

I spent the next 30 days on the pediatric ward. The SJS impacted all mucus membranes. The whites of my eyes were fire-engine red. My lips were nothing but sores. I was unable to eat, due to the blisters and sores in my mouth. (Ice chips and IV's for 30 days).

My parents were told that I would die or be blinded. Neither happened, although my vision was slightly degraded. 'Miracle' would not be an out of place word. I think that I slept a great deal. There was nothing that they could do, apart from treat the symptoms and keep me hydrated.

On a personal level, three regular things stick out in my memory. First, we didn't have cable at home. At this time, 'cable' was only about 10 channels, but one of them was an independent station out of Charlotte. This was a station that I saw when we went to our vacation house, or to visit my grandparents. This station aired Ultraman on weekday afternoons at 4, if I remember correctly. I was thrilled to be able to watch this show each weekday. My parents remember that I would perk up as 4pm came around. I honestly believe that the desire to see Ultraman one more time kept me going from day to day. I may be wrong, and it may be silly, but that is what I believe. Second, I remember rounds. As I had an unusual, and somewhat rare condition, it seemed like they bussed residents in to look, poke and prod. It either didn't bother me, or I was too sick to care. Third, and the worst part was having to urinate. If this is a little graphic, I apologize. The 'sores' were also in my urinary tract, and on the glans. As I was on an IV, I had to 'go' regularly. I assume that they were also concerned with renal failure, as my production was tracked. In any event, it hurt, a great deal. I was not catheterized, but they threatened it when I refused to try to go. Once, the nurse said that it would be OK if I screamed, so I did.

My folks took it in turn to stay with me. Until I had children, I did not appreciate what they went through. Mom is an RN, and she kept a tight watch over me. One of the physicians in the practice where she worked was an Allergist, and he had also seen a case previously. He would always drop by when at the hospital on his rounds (and when not, I suspect). Kindnesses done by others is another strong memory from this time.

Apart from scarring on my lips, and other places, as well as the previously mentioned slight vision deficit, my life has been as normal as life is. At one time, I was told that it likely will shorten my expected life span, but there is no guarantee that I will not be T-boned in an intersection by a drunk driver tomorrow, so that does not worry me.

My apologies if this went long, and I am sure that I have not mentioned every detail

reply to post by Viking04


Wow, what a horrible and scary thing for a little boy to go through. Thank you for sharing this information with us here.

Did your mother's friend, the allergist, ever indicate that this condition could have been a reaction to any illness other than the usually found symptoms, like from the flu, or from a vaccine that you could have received? Thanks for any further information and please feel free, as I'm sure many would agree, to share as much or as little of your story with us as you would like. I, for one, am interested in hearing more about it. Thanks again.

reply to post by SoLittleTimeToRead


There had been no vaccine immediately prior to the SJS. The cause was unknown.

Thanks for the response.