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also known as
Adiposis Dolorosa or Dercum Syndrome
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"Evidently the disease is not simple obesity. If so, how are we to dispose of the nervous elements present? Equally plain is it there we have not myxoedema to deal with. ... It would seem, then, that we have here to deal with a connective-tissue dystrophy, a fatty metamorphosis of various stages of completeness, occurring in separate regions, or at best unevenly distributed and associated with symptoms suggestive of an irregular and fugitive irritation of the nerve-trunks possibly a neuritis Inasmuch as fatty swelling and pain are the most prominent features of the disease, I propose for it the name Adiposis Dolorosa." [From: Dercum FX. A subcutaneous connective-tissue dystrophy of the arms and back, associated with symptoms resembling myxoedema. University Medical Magazine Philadelphia, 1888; 1:140-150.]
What is it?
Imagine, if you will, that you are a healthy woman (but not meaning to exclude men) going about your daily life, doing what we all do, performing our jobs, chores and everything else that makes for an active and enjoyable life. Then one day, lumps start to appear for no apparent reason. Or perhaps lumps you have had for some time start to grow and become uncomfortable. Then pain and discomfort starts in the general vicinity of those lumps. You start to really get concerned. Are they cancer? What's going on?
Being a responsible person, and knowing and believing the value of early detection in any disease, you head off to the doctor. Because the lumps and pains first appeared in the abdominal region, the consensus is that it's a gastro-intestinal problem. So you are poked and prodded and tubes are shoved into openings from your mouth to your anus, searching for the cause - polyps, tumors, cancer. And nothing is found.
That specialist can't help you, and you are shuffled off to another, maybe an endocrinologist, who does more tests and can't find anything. Maybe it's psychosomatic he/she says. I don't know of any disease like this. What did YOU do to cause it, is the usual question.
So from doctor to doctor you go, with doctors not having a clue what you have and now prescribing this and that for the pain. If they can't find the cause, they will try to alleviate the pain. Or put you through a grueling battery of tests, which end up excluding this and that. Finally, if you are lucky, you find a doctor who goes beyond the mundane and researches the literature (or recalls a previous patient with a similar problem) and the diagnosis of Dercum's Disease is made.
This is Dercum's Disease (also Dercum Disease or Adiposis Dolorosa), first identified by Francis X. Dercum, a neurologist in Pennsylvania, in 1892, and bears his name. The disease is characterized by painful fatty tumors and/or fatty deposits. The tumors can be encapsulated or the fatty deposits can be diffuse.
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For comments, discussion or support about this disease, please contact
Camarillo & Somis, California
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