badly.
The answer to that question is no!
I'm actually doing very well. I've gone back to college (online) to earn a PhD in Epidemiology. If I continue to do this well, there are plans for me to pursue a degree in Osteopathic Medicine. I plan to specialize in Lipodystrophy in HIV patients, which I believe is an emerging epidemic.
Having survived all sorts of medical dramas in my life before finally proper diagnosis with Madelung's Disease in 2002, I was unmoved to learn anything about health until being handed a death sentence in 2002 by a group of doctors who
thought my elevated ACTH and swollen body meant I was going to die within a year. This was not the sort of disease I was going to surrender to. It seemed like a stupid pointless kind of death passive and accompanied by a long wasting process. I was determined to die of something that gave me a chance to fight back.
For a number of months I felt I was going to die, but an inspiration to try treating myself with Pancreatic Enzymes led to a
dramatic improvement. Still nobody knew why.
Dr Karen Herbst got hooked on the study of Madelung's Disease and Dercum's Disease right along with a group of patients who had begun to study it long before I came along. Many of them are no longer with us, dying before the successful treatment with enzymes was discovered.
Dr Herbst is now working on figuring out the root cause of Madelung's and Dercum's disease and I'm convinced that we will have these answers very soon.
The archive information about me is there mainly for the benefit of people who may be struggling with a new diagnosis of one of these conditons. I think my own sense of hopelessness shortly before figuring out that Pancreating Enzymes would help me truly demonstratres how possible it is, with perserverance, to find help. (Also with persistent gentle nagging from one of my closest friends Anthony who is an Ohio MD who refused to let me give up)
Being diagnosed with Madelung's or Dercum's may change your life, but diagnosis and treatment are literally improving every day.
You can have Madelung's and / or Dercum's Disease (it seems I have both) and still have a productive life that is worth living. While I appreciate people occasionally expressing concern about my well being, I'm a survivor and I do stay on top of this. If you have one of these conditions you should do the same.
Jenny March 23, 2006
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