February 2017

Julian's Story

Julian was born in July of 2015. He was tiny, weighing in at 6 pounds, with no subcutaneous fat and gorgeous little muscles covering his body. He had a collapsed lung and fluid in his lungs, so spent a few days in the NICU before coming home with a clean bill of health.
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Marilyn's Story

Hello, my name is Marilyn Bucholtz (left) and I live with Familial Partial Lipodystrophy (FPLD). I was diagnosed at the age of 58 by Dr. Elif Oral from the University of Michigan, after my daughter Kayce Gordon (right), started treatment with her.
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Rhonda's Story

My name is Rhonda, I am 34 years old and I have a type of lipodystrophy called Familial Partial Lipodystrophy (FPLD). My FPLD was diagnosed when I was 27 years old after a routine yearly physical from my primary care physician. I had elevated levels of proteins in my urine and because of that he sent me to see an endocrinologist. The endocrinologist knew something was “different” with me from the start just by looking and listening to me.
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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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Leanne's Story

We lost our brave and beautiful sister Leanne in 2016. Leanne had such a kind and open heart. She shared her battle with lipodystrophy with all who needed her. Her advocacy legacy as well as her loving heart inspire us daily. We will continue to fight in her honour.
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Kayce's Story

Hello, my name is Kayce Gordon. I was born and raised in the beautiful city of Marquette, Michigan on the sandy shores of Lake Superior. I grew up ashamed of my body and never wore shorts until connecting with many wonderful women on Facebook who also share my form of Lipodystrophy, FPLD, also known as Dunnigan syndrome. It was very hard wearing jeans to the beach while all my friends wore swimsuits and they didn't understand why I never wore mine.
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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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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.