Monday, October 05, 2009


It is a common complaint among SJS/TENS survivors that it is typically described as a "rare" condition, when it is our feeling that it is not only NOT rare, but we believe to be ever-increasing. It is horribly misdiagnosed (I was, TWICE) and when it is diagnosed, often not properly treated or reported. One reason I believe it isn't that rare is that I have noticed more of those creepy drug commercials on t.v. including vague descriptions of SJS in the warnings. The wording they choose really runs the gamut, from "serious rash" to "potentially life threatening skin reaction," followed by "see your doctor immediately."  

I receive a monthly Google Alert for anything containing the keywords "Stevens Johnson Syndrome" or "Toxic Epidermal Necrolysis." What usually arrives in my inbox is usually a combination of new drug warnings that include SJS/TENS or a story about a law suit or someone's death. 

So in-between inconsistent descriptions of SJS like, "rash (may be serious, eg, Stevens-Johnson syndrome)," "Bullous dermatologic reactions" and "exfoliative skin conditions including Stevens-Johnson syndrome" - there are people's real experiences, "SJS Made Me Look Like a Dead Man," "Judith Matthews Cronmiller, 64, of East Lansdowne, a registered nurse, died Saturday of complications from Stevens-Johnson syndrome, a skin disease." and "Kay Thornton, of Mississippi, lost her sight in 2000 when she came down with a case of Stevens-Johnson syndrome."

That last one cracks me up - "came down with a case.." - like it's a cold. That makes you go blind. And the one description that calls it an "exfoliative skin condition" makes it sound like it's no different than getting a facial peel done at the spa. 

It is apparent to me that no one is really holding these pharmaceutical companies responsible, not even to come up with a consistent and CLEAR definition of SJS. Is it just me, or is this plain WRONG?

The drug warnings were referring to the following medications:
Anti-Depressant, Alpenzin  Source
Muti-use, Gleevec (was approved for use in 8 different disorders... and despite having an SJS warning, the article is about the drug being awarded as best pharmaceutical product)  Source
Diabetes medication, Januvia/Janumet  Source

The real stories were from:
Dead Man
Lost Vision