My 7-year-old niece has a rare disease. It is sclera derma. If the
disease does not stop, it will turn her into a young version of "the
elephant man."
The doctors she is seeing know next to nothing about this disease. They
tell my sister that only a handful of people get it, and usually they
are women in their 30s-40s. My niece is one of a few dozen or so kids
who have this disease.
What the doctors do think is that this disease, which creates scar
tissue like crazy on her skin, and which can go internal and turn her
vital organs into scar tissue, is caused by the immune system becoming
hyper sensitive and creating the leatherlike tissue that is disfiguring
and which could kill her. (Pardon my awkward wording here...it is hard
to be elegant about this.)
My question is this...is there ANYONE out there knows anything about
treatments for this. The only treatment offered to my niece was refused
by my sister. This was Penecillimide D. Apparently this is a very toxic
substance that could do great damage to my niece, including kidney
damage and brain damage.
I'd appreciate the name of any person or school working on this disease
or on problems with hyper-sensitive immune systems. Any books that you
can recommend would be apreciated.
You can reply to me at RPLightfoot at delphi.com.
Thank you in advance.
Robb
916-225-4945
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