Dercum's Disease - aka Adiposis Dolorosa

Dercum's Disease
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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Articles on this site!: There is EXCELLENT overview article here, by Drs. Brorson & Fagher (and a corrected Swedish version)!
We have the article from the www.dercum.net site - "Dercum´s disease - a frequently overlooked disease picture"
We have the "Pain in the Groin" article,
An intriguing article about a tumor caused by parasites with some commentary by one of the authors,
A general article about adipose tissue, and; A technical article describing the differences between Dercum fat and regular fat.

Personal Stories: Here are the stories I have collected so far, including my own. (There is a new one by Sara, who has had Dercum's Disease for more than 40 years!)

Dercum Diagnosis Registry: We have started a list of those people who have had a positive diagnosis for Dercum's Disease. We think there are hundreds out there, just in the US, that the medical establishment know nothing about.


Dercum disease questionnaire: If you or any one you know suffers from this disease, please fill out the questionnaire!

References: Links to other pertinent sites and a lot of reference data (and maybe one or two not so pertinent web pages). Some of the articles referenced can be found on-line! There is also a reference to an article about Lipoma Excision (of the simple kind).

Photo of Lipoma: I've felt it from the outside - this is what it probably looks like on the inside. (A larger picture of the one at the top of the page, with thanks to the people who took the photo.)

Official Definitions: Here are some of the official definitions that do not provide any insight into the pain and suffering caused by this disease!

Updated Notes: Here are some new thoughts and some new observations on the disease from Maureen!

Doctors I have known: This is an evaluation of the doctors I have visited, and how they have helped me or not.
Considering an infectious cause ...: Consider these possibilities ...

So far, people have stumbled on this page.
[To Get the REAL number, add 21,000 to this number.]

For comments, discussion or support about this disease, please contact me -
Maureen
Camarillo & Somis, California

Last updated 19 May 2012

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Please remember that the information provided on this site is designed to support, not replace, the relationship that exists
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knowledgeable physician (if you can find one...)

Note: This page is sponsored by the author, Maureen and the webmaster, Don, as a public service, and we have not received any funding or contributions towards it creation and upkeep. Note that it is hosted, gratis, by Tripod, which provides the advertising at the top of the page. Not too steep a price, huh?

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