Hello,
I was born in 1981, and in october 1985, I have been rushed in intensive
care for 3 weeks because of a big and rare illness : Steven Johnson
syndrome. The doctor who saw me first didn't recognize this illness, and
lucky I am to have survive to it. It seams to "burn" all internal and
external mucous membranes : among them, the largest part of my lungs
alveols, my corneas and eyelids. Another symptom is the fall of all my
nails.
So the first step was to keep my alive : I endure breath deficiency, and
I see only 1 out of 10 (10 µ of normal size because of the cornea
aftereffects) : I need oxygen (2 dm^3/min) every night), and I have a loud
daily treatment. But I realize that I have been lucky.
The eyes-specialist who cares about me grafted me twice a piece of
cornea : but eache time it failed, reject because of a healing unstopping
activity of vessels (under corneas) : noway to stop immuno-activiy (like for
others grafts) because of my damaged lungs and as a consequence my general
health instability.
Here in France, I never hear anything about this : most of doctors don't
know this. It seams to come from a "sulfamide" allergy, but I don't have any
other informations. and these medecines are still in sell : my tip doesn't
seam very "bootable" !. I never have met any other victim of this syndrome,
and I'd like to have some help in my searches, it should exist in world
someone who knows something about it...
Boris
shamalow at easynet.fr
PS: don't care about my english... I hope you can understand me :-)
