Hi folks, I just wanted to share what is going on with me in hopes that maybe it may help you relate, encourage you, but more than anything encourage ME! LOL This is a big week for me in my battle with DD. Up to this point it took me from Oct '07 to March '09 to figure out what was wrong with me, and after 6 doctors incl. 3 neurologists, 2 physiologist and a rheumatologist, I finally found an Internist who believed me that there was, in fact, something wrong, and TOGETHER we solved the mystery. My diagnosis came in the form of a c-spine MRI which indicated I had Madelung's Disease, and from there I poured dozens of hours of research into learing about Dercum's, how the two are similar, it's primarily a "sight" diagnosis, family history, etc....printed out my findings, created a list of all my symptoms incl. my family medical history (my mother, grandmother and aunts ALL had the disease!)..and based on previous testing, facts and examination my doctors gave me the offical diagnosis of Dercum's Disease with Madelung's variance and Lipolymphedema.

Tomorrow I am having a rather large lipoma removed from my right arm/elbow. The Orthopedic Surgeon performing the surgery is also very cool and understanding, and was fascinated by my story of this disease (a big change from the usual doctor response that my problem is I'm "fat, lazy and crazy!") He's not sure yet just how big the incision will have to be or how much he will get out, but he is WILLING TO HELP ME! I already contacted Dr. Herbst and I'm arranging to have a sample sent to her for her research. The surgeon is also going to take special notice of what he sees and removes so I don't have to wait for the pathology report -- I have done extensive research already and am wishing I could be awake to watch! LOL (Comes from my medical background as a nurse I guess.)

In addition to the surgery tomorrow, on Wednesday I have an appointment with a Genetics doctor who agreed to see me and run tests. Like I previously mentioned, I am 99% confident that for me this disease is genetic, passed down from my grandmother to my mother, to me and most likely my 2 daughters (ages 11 and 9, the oldest is already exhibiting similar signs and growth patterns that I had.) I'm determined to find out as much as possible about what I have in hopes that it makes it that much more possible to find a way to treat it, and hopefully slow down the progression.

Now why is this a big week for me? For me personally, this is a step of validation of the disease, and an opportunity to show other surgeons how my body reacts and heals. I am facing other doctors and surgeons who are too afraid to treat me because of my health even though I personally KNOW what my body is capable of handling. I have to prove I can have an invasive surgery with removal of fatty tissue, heal quickly without infection or complications, have no issues with general anesthesia (because God forbid a person who is overweight ever have surgery! LOL ) so that way continue getting the proper treatment I need to regain mobility, energy, and reduce pain. All that said, I am excited and looking forward to regaining full use of my right arm (hopefully.)

Ok, thanks for letting me ramble! LOL No one knows or understands exactly what I go through or feel, no matter how much they try...but I know that the members of this group DO, and can relate to my struggles, battles, fear, excitement, and small triumphs. Writing this has helped me stay focused and positive...and that helps conqueor FEAR!

God Bless!

Desiree Heck