Dixie

[Guest guest]

Hi Dix,

Dercum's Disease (adiposis dolorosa) is classified as a " rare

disease " though we who have it are beginning to think not as rare as

it is believed. It's similar to fibromyalgia, but add in the

formation of hundreds of lipomas and/or angiolipomas (that's the kind

I have) which can range in size from a grain of rice to--who knows?

Mine have been as large as grapefruits. They grow just under the

skin, or can form in organs. I've had over 30 removed in the past

year, mostly from my arms, back, abdomen, and breasts. When I'm

going through a " growth spurt " or flare, I get fevers, weakness,

extreme fatigue, and hot spots on my skin, plus swelling where they

are growing, then-- " ta da! " --new tumors. I also have IBS and a

condition similar to Sjogren's, plus joint pain and small fiber

neuropathy. Really the best place to learn about it is at

www.dercumshope.org. I recently went through a month of chemotherapy

with alpha interferon which backfired and sent me into a new growth

spurt, but it proved that it is indeed an autoimmune disease, not

just a " syndrome. " For years those doctors who would even look at

people with the symptoms would just dismiss us with " go home and lose

weight. " I'm not obese, but some of those with the condition are,

and it is a struggle just to not gain weight. Some with the

condition actually are starving themselves.

I live in Connersville, Indiana, which is halfway between

Indianapolis and Cincinnati. Down here, it is referred to

as " Connertucky " as most of the population of about 10,000 originally

came from Kentucky (except for us--we came from Waukegan, but I was

born in Los Angeles.) And I DO miss Starbucks! Oh, and I am married

to Ron, who has Parkinson's, but is handling it quite well, and we

have a married daughter with a 4-year old son and 16-month old

triplets.

Thanks for asking!

Judi