"FaceBook Friends Saved my Life" - A Lipodystrophy Story 

I’m so glad I found Dr. Oral. I told my docs for 8 years I had lipodystrophy. They wouldn’t listen to me. I walked into Dr. Elif Oral’s office and she immediately said “you definitely have this.” I finally know. I have cardiomyopathy, long QT syndrome, a failing kidney transplant, epilepsy and more. This disease is terrible.

And here is why people should not think that having a high metabolism and being super skinny without fat is normal. I’m glad that people are discovering that having a thin body without a healthy layer of fat is no better than having an obese body type .

Rip Aunt Natalie

Thank you for sharing your experience and helping others. I am a dermatologist and after 20 years of professional practice, I am studying lipodystrophy, I had seen cases associated with HIV, but I did not know that there were patients with inherited or acquired conditions, mostly genetic conditions. Fortunately, once metabolic problems are controlled, you can have a normal quality of life. Ask your doctor about metreleptin, a drug that can reverse metabolic problems. My best wishes and a hug.

I’ve had this damn thing for 4 years and my body is deteriorating. No doctors know about it and the endocrinologist I finally saw did but because there’s no tests for it I got general tests to do with insulin resistance and cholesterol etc. but I think this disease takes a certain amount of time to show clinical signs on tests.. She had this since she was a kid, and the signs on tests might of taken years into the disease being active. I don’t know what to do.

Rip sweetheart

I have partial lypodystrophy. I'm 21. I was diagnosed when I was 13. And doctor oral is my doctor

Reverse Lipoatrophy, Lipodystrophy, and Insulin Resistance - dietary change no a nimasl protein no carbos