The story of Andra
I am a mother, a patient and the co-founder and President of Lipodystrophy United. My story is only one of hundreds living with Lipodystrophy (LD), each varying by subtype or severity. My specific type, FPLD, is a genetic condition with onset at puberty. Although I was not diagnosed until I was 38, I’d always known my body was different and even assumed that some of my health problems were associated with my lack of visible fat. One day, after a trail of questions not related to my condition, I walked into the office of a knowledgeable, old-school endocrinologist and he simple said, “I think you have something called lipodystrophy.” This explained my years of high cholesterol, failed normative tests, high blood pressure, diabetes, near-death pregnancies, exhaustion and insatiable hunger. You mean not everyone is this hungry? I thought I was just a wimp. I suffered in silence because I thought everyone felt like this. Yes, it seemed strange that I could eat an ENTIRE pizza and promptly start thinking about my next meal while my body was thin and getting thinner (Except that darn face that keeps getting rounder and rounder). Without the subcutaneous fat to cover the muscle, I look like I spend my days at the gym. No, I am not a body builder, a swimmer, a runner, and no, I don’t take steroids, really, doctor, I don’t. I am watched and stared at everywhere I go. Often people will say, “Look at that woman, gross!”, as though I cannot hear them from 5 feet away. Others think it’s cool, but either way, I draw attention. I am told “You are sooo lucky!” on a regular basis because I don’t have cellulite….that adipose tissue that creates the hormone, leptin, which helps your body regulate energy, metabolism, satiation, and so much more. I’ll gladly trade some fat for my daily 20+ pills and restricted diet, for the swollen legs, the apnea, the exhaustion, the headaches, the nerve damage, chronic angina and that stroke or heart attack that is hiding behind every corner for some of that cellulite.
Lipodystrophy is progressive. I lived many years mostly healthy and still feel lucky to live an active and productive life. But I’m increasingly tired and “sick”. I would say the fact that we look healthy hinders the ability for people to take our illness seriously. I find it difficult to express that to friends and family in such a way that I am taken seriously yet don’t sound like a complainer.
I lived many years thinking something was wrong with me by not having a diagnosis. The label “lipodystrophy” has allowed me to seek information, demand attention and learn to advocate for myself. There is still limited information, no approved treatment, and certainly no cure in sight. I now work with some of the most inspiring patients, doctors and researchers around the world. I am able to answer questions and provide information with the hope that I can help make the path for every young person with LD a bit smoother. All in all, I think I’m pretty lucky too.