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Dercum’s Disease: Let's create a support group
Chronic Pain | Last Active: 3 days ago | Replies (119)Comment receiving replies
I went to Mayo Clinic in Jacksonville, FL a couple years ago. Before going, I had researched my symptoms for several months. Dercum's Disease was one of the things that repeatedly popped up in my search. When I went to Mayo Clinic, I mentioned it. Most the doctors had never heard of it. The rheumatologist at Mayo, Andy Abril M.D., said, "Dorcum's syndrome is not universally accepted as a discrete disease." The dermatologist there was unfamiliar with DD too. She did a quick online search and then told me that I didn't have it because I wasn't overweight. I felt most of my very expensive visits with the Mayo Clinic were a waste of time and money.
A few month later, I saw a specialist, Karen Herbst, who diagnosed me with Dercum's Disease. She's currently based in California,she isn't associated with Mayo. Since my diagnosis, I still haven't found a local doctor who knows about, or seems willing to learn about, this disease.
Are the doctors at Mayo now familiar with Dercum's Disease? If I went back would they actually be able to help?
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Welcome, @ramsey. I'm sorry that your visit to Mayo Clinic in FL did not offer the care and results you were seeking. Many major medical centers do not name Dercum's as a condition, but rather list lipoma and lipedema as conditions treated or may be referred to as adiposis dolorosa.
As I'm sure you know Dercum’s disease is an incredibly rare genetic disease.
See more from The Dercum Society https://dercums.org/dercums-disease/:
It "mutates fat cells, causes excessive weight gain in unusual patterns, can lead to the formation of painful fatty tumors, impairs the immune system, and in certain rare cases, also mutates and alters the function of the nervous system. In short, it is both painful and disfiguring. Unfortunately, despite having been discovered well over a century ago, little research has been conducted and no cure has been found."
I also found this page from The Dercum Society about building your team of specialists to be really helpful https://dercums.org/specialists/
With rare conditions, especially when they may not yet be universally recognized and few doctors have experience with them, the burden is even more on the patient to find specialists to work with. It is challenging to find specialists who have experience with Dercum patients.
You certainly have found one of the best Dercum's specialist in consulting with Dr. Karen Herbst. I often look at the references on the condition page on National Organization for Rare Disorders (NORD)'s website to see who is leading research in a condition. Dr. Herbst is listed in practically all the papers on Dercum's https://rarediseases.org/rare-diseases/dercums-disease/#references
What did you learn about your condition from Dr. Herbst? What treatments help you manage your symptoms?