February 2017

Maureen's Story

I have been an advocate for myself since I was diagnosed with FPLD in 1978, at the age of 18. Very little was known about Lipodystrophy at that time, therefore, I needed to be vocal and share what knowledge I had with the medical professionals I encountered. I became the teacher and I will continue to teach to whoever will listen and raise awareness!
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Ian's Story

My name is Ian and I am a 25 year old male. I was diagnosed with Familial Partial Lipodystrophy LMNA mutation c.1045C>T about 7 months ago after receiving genetic testing. As a child I was always very skinny and as a teenager I was extremely skinny, 6 stone (about 84 pounds).
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Afnan's Story

A long time ago when I was born, I wasn't like normal babies. I was born very weak and unfortunately weighed less than a healthy baby should. Fortunately an American female doctor was present during my birth who made all the difference. The weakness I had was quite alarming hence my parents worry which was followed by several tests regarding my health but nothing was wrong at that time.
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Andra's Story

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, FPL, is a genetic condition with onset at puberty.  Although I was not diagnosed until I was 38...
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Linda's Story

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...
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Ashley's Story

Ashley Zavela is originally from Brazil, Indiana. She was diagnosed with Familial Partial Lipodystrophy (FPLD) in 2006 while living in Knoxville, Tennessee after some of her lab results revealed high triglyceride and insulin levels. In 2007 she had a bout of congestive heart failure.
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P.L.'s Story

When I was a little girl I was fairly healthy, but I was very skinny and had a big appetite.  When I reached puberty I developed a muscular look, my veins started popping out, and I got a double chin.  I was devastated!  I wanted to look like the other girls who were getting womanly curves.  Every night I prayed that I would wake up and look “normal.”  But when I woke up in the morning and looked in the mirror I still looked the same.  I felt so depressed and confused.  Puberty is not an easy time, especially if you look different.  
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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.
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Amy's Story

I am a 33 year old female. I live in Mount Vernon, Washington, which is about an hour north of Seattle. I grew up in Ellicott City, Maryland, until I was 15 and then moved out to the west coast. My health issues started when I was 9 to 10. I entered into puberty, and that is where everything seemed to be "jump started".
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Share your Story

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.