DEAR DR. GOTT:
I have followed your column for a number of years and believe my problem will be a first for you.
I have been diagnosed with Dercum’s disease. I knew for a long time that I had a problem but was turned away from many physicians who thought I had a mental problem or was a hypochondriac. As far as I can discern there is no current research in this country or even any interest in the problem. It is listed among the rare diseases and that is as far as I can go.
I am married to a physician who is just now beginning to understand the extensive problems that come along with this condition. I also feel that there are many women who are suffering from Dercum’s but going undiagnosed because they are simply passed off as fat or crazy.
I would like to know if you have any recent information on Dercum’s disease.
DEAR READER:
You are correct that this is a first for me. I had my work cut out for me in attempting to research more about this little known condition. The good news is, I did find some current information and even some places to learn more and seek support.
Dercum’s disease has several symptoms. The primary complaints are disproportionate weight gain (not caused or relieved by diet and exercise), fatigue and aches and pains. The fatty masses often are extremely tender to touch and seem to cause bone or entire body pain. Some sufferers may bruise easily, have depression, are susceptible to infections, heat sensitivity, get headaches, cognitive dysfunction (such as lapses in memory or concentration), swelling, and a host of other associated conditions.
Women are 20 times more likely to have the condition than are men. The cause of the condition is unknown and there is no cure. Treatment is to address symptoms one at a time.
Very little research is being done but there are some doctors in Europe and especially Sweden, who have taken an interest in Dercum’s. While most doctors are unfamiliar with this condition because it is believed to be very rare, the researchers in Sweden don’t feel this is the case. Sweden has an approximate population of 9,000,000 and it is estimated that 10,000 suffer from Dercum’s based on their current studies. That means that approximately one out of every 900 may have the condition. If this is found to be true that would mean that the US with its nearly 296,000,000 citizens could have more than 325,000 suffers.
According to The Dercum Society website, there is only one physician (an endocrinologist) in the US, located in San Francisco, who is actively trying to research Dercum’s and other related disorders. You can learn more about Dr. Karen Herbst by going online to her website, www.LipomaDoc.org.
The Dercum Society is an informal gathering of physicians, medical personnel, sufferers, and family members. They can be found online at www.DercumSociety.com. There is also information available on the National Human Genome Research Institute website, www.Genome.gov. The NHGRI is part of the National Institutes of Health
Until more research is conducted, your options are limited. Unfortunately, since little research is underway and few physicians are interested or even aware of the condition, getting help will be a slow process. However, I hope that by printing your letter, someone with the power to help will take interest. I hope that we have started the ball rolling and others will keep it in motion. Good luck and thanks for writing.
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