01 February 2017

Linda's Story

Linda"Growing up mostly in Maine, I worked from age 12 to 16 on a vegetable farm during summers and in their green house during winters to help pay for my school clothes. Over those 4 years, I developed a very muscular, somewhat masculine physique, with small hips and a disproportionately chubby face. I thought it was due to my work picking and hauling bushel baskets of cucumbers, tomatoes and green beans, coupled with my insatiable appetite (Hyperphagia page 110 & 114)! Boys called me names (“York Pork” – my maiden name was York), did not want to date me, and a group of girls bullied me, punched me and called me “Nail” whenever they saw me. Ashamedly, at age 16 I became bulimic, hoping I could lose the weight in my face and attract a boyfriend. Though I lost 30 pounds that summer, my face remained very heavy.

While standing naked in a group shower with 25 other women in Air Force Basic Training (like Boot Camp), I noted how different I was from the others. A new female recruit actually came up to me and asked, “Are you a Transvestite?” Red-faced, I replied “No,” speedily dried off and dressed. Seems funny now, but it most assuredly wasn’t back then.

While serving on active duty for the Air Force in 1986, I was diagnosed by an endocrinologist as having “Lipoatrophic Diabetes,” which doctors now call Familial Partial Lipodystrophy (FPLD). Extremely high triglycerides and cholesterol, Polycystic Ovarian Syndrom (PCOS), “Moon Face” (excess fat on my face and neck), very low fat in my arms, legs, and hips, hirtsutism, chronic depression and extreme insulin resistance led the doctor to his diagnosis. He told me there was little known about this rare disorder and no known effective treatment at that time in the 1980's.

In 2011, I miraculously met nine others with Lipodystrophy (LD). Some of them have worked very hard to increase awareness and education about this rare disease, which led to the Patient Registry at LDConnect.org, this LU website and 4 supportive Facebook groups where we can all share information. Some of these brave patients also shared their stories with the U.S. Food and Drug Administration (FDA), who recently approved a treatment for the Generalized types of LD. We hope in the future an effective treatment will also become available for those of us with Partial LD. In May 2014, I began a clinical trial with Leptin, thanks to Dr. Elif Oral. As of May 2015, my voracious appetite, my high blood sugars and triglycerides have decreased significantly. Also, my liver biopsy results are markedly improved.

On July 16, 2015, I fell directly on my right hip onto cement, breaking it in 3 places. On the bright side, my surgeon said my FPLD bony hips made it easier for him to operate due to the lack of normal fat! A special thanks to Kayce, Andra, Maureen, Claire, Troy, Leanne and Dorothy."

With a chubby, dimpled smile,

~ Linda (York) McCormick, Escanaba, Michigan, USA​​

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