An Inside Look: Dealing with Dercum’s Disease

I’m a 37 year old woman of four children. Eight years ago I started to notice my body was in pain a lot. Slowly, year by year, that pain got increasingly worse and other symptoms began to follow. There was such major swelling, to the point I couldn’t bend knees. Seemingly overnight, I went from 120 lbs to 190 lbs. Today I remain at about 150 lbs and can’t seem to get under that. Chronic migraines, heart palpitations high blood pressure pulmonary hypertension my memory and concentration is very low I haven’t been able to return to my job that I loved and worked since 1996 all because of this disease.

There is many more symptoms too many to list but the one symptom that finally got me a diagnosis after all these years is all the hard nodules all over my body. These nodules all ranged from a grain of sand to as big as a golf ball in the adipose tissues.

The benign tumors are what causes me extreme pain 24 hours a day. I’ve been in pain so long I have forgot what it feels like to live without pain. Between crippling pain and fatigue I’ve had to miss out on a lot of my kids lives. This is probably the most difficult part of having this disease I once was super mom flying from one activity to the next and now I’m a mom that sometimes can’t get out of bed for a week.

It took eight years to get a diagnosis.  It took persistence on my part even when dozens of doctors and specialists threw their hands up, with no idea what could be wrong.

I had to push through even when they thought I was crazy , or stressed or just needed to go on a diet. But one day I found a doctor that knew what I had, she was amazed to see someone that had this and she quickly got me in to see the only specialist for this disease in the United States. Dr. Karen Herbst confirmed my diagnosis and then some.

She said I have rare genetic mutation form of Dercums, connected with Ehlers Danlos and vascular disease and lymphatic disease with scarring with secondary lymphadema. So was diagnosed with multiple mutations this was total information overload but now I know I wasn’t crazy and so thankful I stayed persistent for a answer. There is no cure for this and it is a progressive disease but trying what I can to help improve quality of life , stop deteroation of my muscles any further and to now keep pushing until more people become aware so that this can be studied and find some relief for myself and others. I don’t want to see any more mothers at the age of 37 applying for disability with this ugly disease.