Grasping at a doctor's comment that it could be ..., I started researching the disease on the WWW, by first figuring out the correct spelling of adiposis dolorosa. After that, I found it was also Dercum's Disease (or Dercum's Syndrome, or Dercum Disease), and this form of the name was at least as common.

The research yielded a description of the symptoms, very little information as to the cause, and very little in treatment.   Treatments were: Control the pain, Control the depression (wouldn't you be depressed if you hurt all the time), suck it out using liposuction, or excise it using surgery. The alternative was to accept and live (and die) with the disease and the associated lumps and bumps and pain.

Of course, the cause was unknown, but some of the older research has concluded that it is an inherited condition. But there is no organized research dealing with the disease - If it is inherited (autosomal dominant), then does everyone with this gene get the disease?   It does seem to run in families, but some of the people we've been talking to cannot find it in their immediate families.   The next research question is what initiates the disease? One article talks about a case of the disease that was stimulated by corticosteroids.

The general description of the disease refers to mainly women, usually obese, ages 45-60, showing signs of painful fatty areas. One article referred to the fact that the doctor thought his patient, an obese woman, was a malingerer, until he was finally convinced that the pain was real and the disease did exist. Because of these types of observations by the predominantly male doctors who see these women, I can see why the disease hasn't been researched very much in this country.
Who cares about older obese females?

But the bottom line is there is no organized research into this disease, and no one is collecting and correlating the various research that has been done.   A number of the more interesting sounding articles have been written in Russia (USSR), but those articles are of little value because they have not been translated and are unobtainable.

There are various articles that point at pecularities of the disease, but there is no central clearing house for this information.   And few doctors know how to access the WWW, or are even willing to spend their precious time researching the disease (although we actually found a few at UCSF).

What does it take to stir up an interest in this disease? -- I know, find someone famous with the disease!   Know anyone?

I offer a description of the disease as one that CAUSES the obesity, and as the disease follows its course, the fatty deposits become more aggressive, grow larger and become entwined with the nerves and cause pain.  Further discussions have centered on the possibility that the nerves are the ones that cause the tumors to grow, which would explain why the fatty deposits are entwined with the nerves.  Hmmmm.

I'm a man with a science and math background, who has been observing the progression of the disease and came to the conclusion that the "cause" is very complex and a better treatment is not going to happen because virtually no one in the medical community is interested in the disease - neither its mechanism or finding the cause or a means of slowing down the disease.

All it would take is MONEY! (or, at least, this would be an advantageous starting point, offering research grants to bright, young doctors)

This site is serving as that clearing house for data and observations. (Just look at the guest book!)