“My Disease Stumped 72 Doctors” One Man’s Story of Decrum’s Disease
February 7, 2016
By Brian Sirk
I have this rare disease, it’s called Dercum’s Disease.
I was diagnosed with Decrum’s nine years ago.
Before that I had spent over half a million dollars trying to figure out what it was that I had. It seemed like no doctor wanted to help me find out either. They declined tests and told me I didnt need to look any further because it was all in my head.
When I had hundreds and hundreds of lypomas/lumps all over my body they still wouldn’t take my concerns seriously.
I cant say I blame them if they didn’t know about the disease-they didn’t know! But 72 doctors in 5 years and no help? That’s the kind of math we need to eliminate in the rare disease world.
There is no cure for this disease and there are 25 different complications that go with this disease: blood problemsl thyroid , liver, depression, head issues (the list goes on.)
Right now I’m 58-years-old and my health is so bad that I cant hardly go out of the house anymore or even get out of my bed. Male Dercum’s disease is 20-35% rarer than the female version.
It’s common for patients to be misdiagnosed as drug-seeking. There are very few who understand how to even treat the disease. Currently, I’m raising funds to travel to a program by Dr. Karen Herbst that has been highly recommended. In the meantime, I’ll be rallying for awareness. I’ve created a website to help educate patients--you can also visit the site to see an article that was recently featured by NBC on Decrum’s.
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