There is such focus on obesity these days. I agree that we all need to be fit and healthy, but what surprises me is the absolute hatred I read directed toward obese people. I know about it because I have struggled with weight most all of my life. I was a rail-thin kid but when I hit puberty, I gained 40 lbs in a 3 month period. Since then, it has been a personal battle. I use the word battle, literally. I have exercised to exhaustion, tried every diet under the sun and was successful some of the time. I have never been a big eater, nor have I ever really liked sweets. With my first pregnancy, I gained a lot of weight and was unable to achieve my pre-pregnancy weight, although I came close. My second pregnancy brought more pounds and I kept some of that weight too, so I went to Weight Watchers. The first week on the plan, I gained 7 lbs because I was eating more food than I did normally. Frustrated, I started exercising- walking 3-5 miles every other day and riding my bike 10 miles on the days I didn’t walk. I was plagued with muscle cramps each time after exercise which puzzled me and although I toned, I did NOT lose weight. I felt great, increased my stamina and fitness level but the pounds remained. In the following months, I noticed a 5 lb weight gain periodically despite careful dieting and exercise. It didn’t seem to matter what I ate or didn’t eat, I still gained.

Skip forward years later to my late forties when I had two major surgeries. The following year my life began unraveling. My weight was at an all time high and I was so fatigued that I had a hard time managing simple daily functions. I was in terrible pain, had days of brain fog and thought I was dying. I was losing my balance and falling down, unable to take care of my house, sleeping 12-18 hours a day and was seriously thinking about purchasing a wheel chair. I went to a Rheumatologist who told me he thought I might have Adiposis Dolorosa aka Dercum’s Disease. I had never heard of this disease. He suggested I contact Duke University since he had one other patient who had Dercum’s and found some help at Duke. I came home and looked up Dercum’s on the Internet. I found a website describing another woman’s journey with Dercum’s. I recognized myself in her description and as I read more, the tears began to stream down my face. I had long suspected that something was wrong. I knew the weight I carried was far too much for the amount of food I consumed and the exercise I did and now I finally understood the muscle cramping and the pain I endured. Things began to make sense. Finally, I knew the guilt that consumed me from being obese was unfounded; the obesity was not my fault. I found validation and solace in her words. But what was I to do now? No doctor knew what to do for me. In fact no one but the Rheumatologist I had seen had ever heard of Dercum’s. A new kind of panic set in: I didn’t know what to expect. Was I going to die? Was I going to become disabled?

I found a support group on the Internet and pummeled the people there, who had Dercum’s, with questions. I lived and breathed Dercum’s. It was all consuming and I could barely focus on anything else. Finally, as my mental state calmed down, I became pro-active instead of reactive. I became a moderator on a couple of websites dealing with diseases of the fat. Helping others through the same journey was healing. I met some wonderful cyber friends and through them was able to keep my sanity. In 2004, I think it was, I was moderating on one of the sites when a poster, called LipomaDoc, came on looking for people with Madelungs Disease. I began talking to LipomaDoc and found out LipomaDoc was a researcher recruiting patients with Madelungs, which is also a fat disease. I boldly asked if LipomaDoc would also like to study Dercum’s disease and put them in touch with the webmaster, a wonderful lady named Dora*, who also had Dercum’s Disease. Sure enough, LipomaDoc was interested in Dercum’s too. Turns out that LipomaDoc was Karen Herbst, PhD, MD from UCSD/VA hospital. Dr. Herbst has gained an incredible understanding of several fat disorders since that fateful day. She has made a huge impact on my life for the better, providing me with the much-needed validation that was missing from other physicians I had previously seen. She is a wonderful, compassionate, smart, kind and dedicated physician who is determined to help all of us with fat disorders. It is my hope that other physicians will become interested and step forward to aid in the search for a cure to these often debilitating fat disorders.

FDRS is dedicated to promoting awareness by educating the public and medical community about many of the disorders of body fat. These disorders are painful, debilitating, poorly understood and under-diagnosed. Our aim is to make it understood that it’s not only food that can make you fat. These diseases can cause uncontrolled weight gain. The increased fat caused by these diseases is not metabolically available. In other words, it cannot always be dieted away. There are no effective treatments for these conditions at present- only symptom management which is often not very effective. Further research is definitely needed as are monies to fund new research. Please check out our website and help us make a difference.