I recently found out that I’ll be having surgery soon to take care of something I mentioned a few posts back – I’ve been diagnosed with a very bizarre, little known disease that can be fatal if not treated. Once I receive final approval from my insurance company, I’ll head up to Baltimore some time in the next two weeks or so for the first of many operations. My doctor says I should expect at least three rounds of surgery between now and February. Unfortunately this means it’ll be another Christmas stuck in bed, doped up on pain killers, but it’ll be well worth it. The condition I was diagnosed with, Dercum’s Disease, is rather debilitating on its own. I’ve been deteriorating pretty quickly. In fact, I’ve barely gotten out of bed for the past few weeks and it’s been so painful that I’ve had to stay in my pajamas because regular clothes hurt so badly. And we should all know by now, I’m no whimp. That oughta tell you something about the joyride that Dercum’s Disease has been.

    Don’t be surprised if you’ve never heard of Dercum’s Disease before, because in all honesty, not many doctors have either. It was discovered over 100 years ago by Francis Xavier Dercum, a rather famous Neurologist. Since that time, however, only a few doctors have attempted to study it. Information is really scarce – no one even knows what causes it.

    What we do know is that the body starts gaining weight gradually in a really strange disproportionate configuration. With Dercum’s, the weight always accumulates in the same pattern – the thighs, the upper arms, and eventually, toward the end stages of the disease, it will also start attacking the stomach and the lower extremities. As the disease progresses, the rate of the weight gain continues to increase. Despite this rapidly increasing weight, the face, back, and hands remain untouched, showing how much the body should naturally weigh based on diet and exercise.

    The fat itself isn’t exactly normal – it has no bearing on diet, is completely resistant to exercise, and worst of all, it’s incredibly painful. The slightest touch feels like being stabbed, moving becomes incredibly difficult, and toward the end, even the smallest seam of the lightest clothing becomes unbearably painful. The dramatic pain is caused by the very fat cells themselves, which somehow become overgrown and enlarged. The fat cells continue to grow and grow to unnatural sizes, and no one has been able to figure out why or how. Soon, that painful fat can also develop into a plethora of tumors, leading to a greater susceptibility to cancer and infection. The uneven weight spread randomly throughout the body causes great wear and tear on joints as well. I was just recently told that I’m already beginning to show signs of early arthritis in my hips, and I’m not even 21 years old yet.

    Dercum’s also causes a myriad of other symptoms, including severe headaches, nerve pain, weakened immune system, cognitive dysfunction, insomnia, and extreme fatigue. It continues to degenerate the quality of life until the patient is confined to bed, afraid to move for fear of the pain, yet receiving no relief even from narcotic pain medication. Ultimately, if left untreated, the heart can no longer keep up with the enlarging fat cells and the rapid growth of the body. Soon, the heart simply gives out, well before its time.

    I’m already showing all the signs of classic end-stage Dercum’s Disease. Despite maintaining a constant diet and exercise routine, I have gained over 50 pounds. But you’d never know it by looking at my face, my neck, or my hands. My back is still so slim that my ribs are clearly visible. In fact, despite gaining those fifty pounds, my waist and rib measurements have actually gotten smaller. All of that weight has been gained in my thighs and upper arms, but now it’s beginning to spread to my stomach and lower legs. Worse, I’ve already found five tumors, and several more are still forming. My body has become grotesque and disfigured, and I’m in so much pain that I can no longer truly function.

    It’s not at all fun. In fact, it’s really humiliating and at times it’s downright depressing. But despite all of that, I’ve tried to do something good with this experience. Since there isn’t any one concentrated effort to bring some awareness to Dercum’s Disease, I’ve decided to do something about it. I’ve been struggling for years to be properly diagnosed, and I’ve been struggling for weeks to convince my insurance company that my need is truly severe and warranted. I’m tired of the general lack of understanding and awarenss of this disease among the medical community and the public as a whole. It’s impossible to know how many people are suffering from this disease around the world, but are misdiagnosed or simply suffering and dying without knowing why. It seems so senseless, especially considering the treatment is simple and so readily available. Studies have shown that simple liposuction can prevent pulmonary failure, reduce the painful symptoms, and dramatically improve the quality of life. It seems so simple, and yet so many people are suffering needlessly.

    I’ve created The Dercum Society, an international support group and resource organization dedicated to promoting awareness of Dercum’s Disease. If more people knew about it, more people would be screened, accurately diagnosed, and treated. And hopefully then no one would have to go through what I went through, suffering for years without any understanding. I can’t tell you how many times I’ve been told by doctors that obviously I was just eating too many ho-ho’s and if I’d change my diet I’d feel better. And now, because I went untreated for so long, the liposuction I’ll have to go through will be a long, drawn-out, extensive and painful process. If people only knew to watch for the signs of Dercum’s Disease, and if doctor’s only knew of the disease’s existence and what to do about it, this wouldn’t have to happen to anyone else.

    Please, take a look at The Dercum Society’s website and educate yourself about this disease. If you think you have Dercum’s Disease, talk to your doctor. If you know someone who’s been suffering like this for years, send them the link. If you’re a doctor, please read about it and share the information with your colleagues. Hopefully the more people who know, the more people who will be treated before it’s too late. Thankfully I had the care of a doctor who invested his own personal time in researching my case. If it weren’t for him, who knows. I think I owe my life to that man, and while I’m grateful, I don’t want anyone else to have to rely on such luck. We can change this.