--Dercum's

[Guest guest]

Hi ,

Dercum's is an autoimmune (at least they think so) disease. There's

really no research being done because it's so rare. It's marked by

extreme fatigue and weakness, many many angiolipomas throughout my

body (fatty tumors with blood vessels,) very tender areas of fat

deposits and a tendency to gain weight, clumsiness, headaches, IBS,

joint pain, and a host of other symptoms I won't go into here. It

can't be diagnosed by any test at the moment, though some of us

apparently do have some endocrine imbalances that point to a possible

low growth hormone. So far the only treatments that have shown any

promise are a full body liposuction and some growth hormone

injections, but the injections have only been tried on a few people,

and only with select symptoms, like wasting of body fat (which I

don't have!) And like a loty of people with RA, and other connective

tissue diseases, it is often misdiagnosed as fibromyalgia, or we are

just told we are " too fat " and to go home and " get over it. " In my

own case I am about 15 lbs. overweight right now, and after my last

major surgery in October to remove 12 tumors, the surgeon told my

husband that " if she would just lose some weight, she wouldn't have

so much fat for the tumors to feed on. " My husband nearly slugged

him.

So that's it in a nutshell. Aren't you glad you asked? I try to

stay active, keep house, garden, bowl, and do aquatherapy twice a

week. I'm goofy, and refuse to wallow in self pity. I'd much rather

make people laugh, because it makes me feel better. Now tell me more

about you--are you a student, wife, mother, what? And thanks for

asking about Dercum's, the more people who know about it, the sooner

we may find a cure.

Judi