Stevens-Johnson and Lyell Syndromes

You probably never heard of the syndrome Stevens-Johnson or Lyell. But you should. Before it's too late. These are syndromes due to a severe allergic reaction to medications (that can be, in principle, any medication, but statistically more likely due to sulfamide antibiotics, allopurinol etc.). I had to live through this syndrome and almost died in the ICU (Réanimation in French) at hospital Bichât in Paris. For me the cause was a sulfamide family antibiotic. The syndrome first develops with skin eruption, fever and eruption of the mucus parts of the body (eyes, mouth, anus). To describe what I was like, it was as if I had survived severe burns. But from the inside (indeed the severity of the reaction is often described as percentage of burn). My skin was coming off (necessitating specific care to prevent infection which is a huge risk as skin protects us from nasty intruders), my mouth was an open wound. And my eyes. I still have traces of this experience in my eyes as during the healing process, the cornea stuck to the mucus parts of the eyes. These and other possible consequences could be severely debilitating. I was lucky as I only had, relatively speaking, minor traces, but there are others who were so handicapped that they could not work anymore or live a life as before. Many doctors are probably not familiar with these syndromes either (they make mistake them for other skin eruption conditions), which means that a patient may not get the care he or she needs. And early care of the syndrome does have positive effects in term of traces and survival. The two syndromes have mortality rates between 30 and 40 percents. It is rare (about one person in a million in France). The long term effets, aside from obvious physical consequences, include psychological ones such as post-traumatic stress. In Paris, Henri Mondor Hospital in the suburb of Creteil is considered to be the best to treat these syndromes. They have the best MDs and dermatologists who specialize in care of and do research on the syndromes. There is also an association for survivors of the syndrome in France (Amalyste). I read experiences as told by survivors of the syndrome. I take my hat off to them. They are very brave people who fight through a very difficult experience and continue to fight despite all that they have to live with following the syndromes.