Dercum’s Disease

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.

100 responses to “Dercum’s Disease

  1. I have suspected for years I had DD but due to a positive ANA was labeled with lupus. No meds helped except pain relievers. Recently went to dermatologist who is quite firm this is DD. However I have been unsuccessful finding anyone in N.C. who can treat it. I would be willing to go to a close state, heck I even thought if going to Arizona. When you are essentially bed bound, disability has not been approved yet, and not sure if you may lose everything you own, you will do anything. My family has thought I was crazy for three years now, so whatever. Any help or advice is appreciated on providers. Only serious responses please!

    • Hi there,
      I really do feel for you being in a very similar state myself with a very similar diagnosis……But there is definite treatment for DD except taking the lipomas out and wearing before and forever afterwards compression garments. I would invite you to read the post I have updated today about Mast Cell Activation Syndrome. This syndrome causes a lot of antibody action and I too have been diagnosed with Lupus with all the necessary antibodies, but when I look today at my body, I still do not feel it is that or the other random diagnoses I have…… Panhypotuitary Deficiency, Lupus SLE, EDS, DD, Lipoedema, Lymphoedema, Fibromyalgia etc etc……I would say to you to find any understanding General Physian, one who can look at all the seperate problems caused by whatever is causing DD and the likes and then ask for help for controlling pain. Surgery if you can manage it, but only with compression to empty out Lymph both before and after surgery. Lymphatic Drainage….. It is not worth getting into debt to hear what you already know. Make up an interesting and factual file on both DD and MCAS and attack the General Physician with facts and demande that he treat what ever you need treating, pain, disability, arthritis…. etc. Good Luck, Cx

    • Hello, I also have been struggling with DD and disability medical records got misplaced. It is a rough road, I find just doing minimal movements and not over doing myself like I used to works for me.
      My doctor has taken out small Lypomas, but nothing of the size that I have.
      I am going to Arizona in 2017 to see Dr Karen Herbst. I literally am saving aluminum cans for my trip and alot of my friends to help with cost. I also suffer from tailbone injury and Lypomas on my back make for lots of tossing and turning. I would like to join this group so I don’t feel so alone, and connect with others and be helpful conversations to find new information about DD. Thank you for listening. Lots of Love!

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