Dercum's Disease Resources

Dercum’s Disease (adiposis dolorosa) is not only a debilitating painful disease, but often a frustrating one.  Patients often struggle to find reliable helpful resources about this disease for themselves, for their medical doctors, for their families, but also for disability and insurance claims.  One would think that a disease that’s been documented since the late 1800’s would be widely recognized, but sadly, it’s not the case.

Dercum’s Disease is characterized by painful multiple fatty growths (lipomas and/or angiolipomas) that can vary widely in size. Some growths may be as tiny as a rice grain while others can be quite large and disfiguring.  Contrary to some older literature, Dercum’s Disease does affect both men and women- but men currently account for a small fraction of those diagnosed.

This website will provide links and titles to medical articles, support groups, and related information about Dercum’s Disease and some associated disorders.  Links will be provided so that articles may be printed or cited as needed.

There are few doctors who are known for their knowledge about Adipose Disorders and all of the conditions.  It is best to start with a Dermatologist, even though they often do not realise that Dercum’s lipomas are much deeper than Multiple Familial Lipomatosis, where the lipomas are on the surface of the skin and can be popped out through a small incision.  For major surgical removal, it is best to see a Plastic or Reconstructive Surgeon, who have a better idea of the depth and extent of the size of some lipomas.  They are best imaged through an Ultrasound imaging as in X-rays and MRIs, they are often difficult to distiguish from neighbouring tissue as they are usually the same density as fat.

HINT: To best access all the information here, please click the Category headings.

NOTE:  This is an informational-only website;  always consult a medical professional for a diagnosis.