I first noticed the dark skin patches in my early teens. I didn't think
much of it until the affected area grew larger and eventually I noticed
it on places all over my body (not too sure when they first actually
"arrived".) A dermatologist took a biopsy from my leg and the results
affirmed the suspected Scleroderma. The areas that are currently
affected are the following:
- entire inner upper right thigh
- small patch on my upper left leg near the bikini line
- streak extending around the left side of my waist
- multiple small spotty patches on my upper back
- very pronounced vertical streak on the left side of my neck
Basically, it's almost as though the condition has snaked itself around
me, like it is wrapping me with a garland of discoloration. I used to be
really embarassed by it but to be honest I almost forget about it until
I shows up in photographs (artificial light makes it much more noticable
I surmise.) I do admit, however, that I'm still somewhat insecure about
it which translates into generalized low(er) self-esteem and a
questionable obsessive tendency of sizing up the clearness of other
people's skin. But luckily with age seems to be coming wisdom (perhaps
just apathy) and I'm slowly learning to appreciate that there's beauty
in imperfection.
Last year I proactively sought out a specialist in Toronto which wasn't
too helpful. It only reaffirmed that nobody really knows what it is or
how to remedy it due to the lack of research which, from what I gather
at least, is due to a combination of factors: the unlikeliness,
indeterminacy and unpredictability of when the disease will be or might
be fatal; its relative rarity; and the variance of affliction among
patients (to begin with there's only a small subject pool and among
these cases it isn't clear there exists a definitive subset of common
elements required of meaningful scientific inquiry/conclusion). The
disease seems to manifest differently in different people...
Having said all this, I sometimes try to play detective and figure it
out on my own. "Why me" is a question I often ask myself. The most
compelling link that I can find at least for now is that it might have
something to do with my blood condition which automatically is thought
to indefinitely affect my immune system (albeit, also in a
scientifically inconclusive way). This condition is known as hereditary
spherocytosis - round red blood cells instead of doughnut shaped. Since
scleroderma is an autoimmune disease and my immune system is already
compromised, or at least operating 'differently,' perhaps this is the
link?
Sometimes I'm amused by the thought that I'm a specimen of scientific
anomaly...
leslie_hern@hotmail.com
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