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[IP] RE: Obscure Diseases

For your info, I too have a rare disease, similar to Elephantitus, it's kind
of like Neurofibromatosis, it's been very roughly diagnosed as
Angiolipomatosis.....I have lots/multiple tumours all over my body. Most
doctors initial concern is whether or not they are malignant, which I know
from many biopsies, that they are not. Then I am usually sent on my way with
a "I don't know why you have them, but they are not cancer, so don't
worry." ----Really makes me feel good. I have much sympathy for disease such
as Proteus, "Elephant Man's Disease". I have been driven completely crazy by
Dr.s I could scream with frustration. As long as they are not cancer, they
DO NOT CARE. I will not go out in public with my arms, or legs exposed. They
are covered in tumours. It looks like I am stashing marbles, golf balls,
and/or eggs, under my skin. These are all very painful and vary in
intensity, some days are worse than others, some days they feel like they
are on fire. I have never met another person like myself. Ever. I only weigh
115lbs. I have had diabetes for 12 years. Diagnosed with type 1 at the age
of 21 in my first trimester of my first pregnancy. I have been pumping for
about 2 1/2 years now. These tumours did not start with my DB. The doctors
have no idea, as to what they are caused by, or  how to stop them from
growing. there is probably one new growth per week. So.......If Mr. Gates
wants to contribute to ANY research I agree that all research could us in
maybe some small way. I personally think that Eli Lilly and other companies
make far too much money off of our disease to be pushing for a 'cure' any
time soon.
If anyone has any ideas as to what I have or has anything similar.PLEASE let
me know.
Thanks, Wendy
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