05 February 2017

Natalie's Story

I have Familial Partial Lipodystrophy. My journey to a diagnosis took over three decades. Much of my life I received medical care for an assortment of health problems (polycystic ovaries, pregnancy loss, diabetes, high triglycerides) not understood to be caused by lipodystrophy. FINALLY my 5th endocrinologist told me she seemed to recall a patient who looked like me in a medical textbook (i.e. muscular limbs and severe fat loss in many areas of the body). That was the first time I heard the word lipodystrophy. She could offer very little further information. I went straight to the internet and became a "Google doctor". I found resources, names of specialists, clinical trials, and a tribe that mentored me through the grieving process of being diagnosed with a rare disease.I found Lipodystrophy United and a Facebook support group (Living With Familial Partial Lipodystrophy). I had answers...finally...at age 37. Game changer! I am confident I would not be here if I hadn't come across this very website, it literally saved my life.

Thinking back, I’d have to say my biggest battle was with, hyperphagia, a hunger that is not satiated, is a common part of the condition. It has ruled my life. So many childhood stories about my "hangry" self. It isn't the type of hunger that others can relate to either. We are deficient in a hormone called leptin--which tells our brains if we feel full. My mother once poured ice water on me because I was raging over food. I laid on the kitchen floor and cried for an entire day (like 8 hours) for ice cream. Bullying and body image issues affect many of us. I try to take advantage of every opportunity to educate curious individuals. I am not fond of stares and rude questions. I can only take so much. I’d also like to mention the emotional aspect of lipodystrophy. Anxiety and depression are common in our community. It is tough enough to deal with a chronic illness but this is an additional biologic factor with the disease.

If you are newly diagnosed I want you to know that the grieving process is real and takes time. I am here for you. The lipodystrophy community has been a lifeline and I would love to pay it forward and answer any questions. Please feel free to reach out to me at info@lipodystrophyunited.org and put “Natalie” in the subject line and the message will get to me.

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Help others learn about Lipodystrophy by sharing your story. Your personal journey will help inspire and connect other Lipodystrophy patients and inform rare disease stakeholders and the public about this rare disease. Raising awareness through story-telling is an effective way to advocate! Email Global Genes to learn more.