Anyone with Adiposis Dolorosa (Dercums Disease)?

[Buckeye Girl 8]

Just wondering if anyone else getting sleeved or already sleeved with this rare disease (syndrome).

I was recently diagnosed with Dercums Disease, it is extremely rare. It causes soft tissue, benign tumors (Lipmoas) to deposit in various places in your body, usually under the skin, but sometimes they can attach to your organs. As they grow they push on nerves causing much pain, also your skin may feel bruised, but it's not. It is complicated to explain. It is known as a fat disorder. Being overweight doesn't cause this disease, but if you are overweight when diagnosed if progresses much faster due to the toxins your current fat gives off, producing more "Dercums" fat. My Dr. told me that weight loss surgery would decrease the chances of this becoming a debilitating disease by at least 70%. My insurance will not cover it, it is an absolute exclusion. So, since I am a self pay patient, I have no alternative but to go to Mexico. I am thankful for the self pay alternative.

Oddly enough the specialist with the most knowledge and experience with this disease is located in San Diego, Dr. Karen Herbst.

I would love to hear from you!