July 2018

Sonia's Story

The two people in my life that lived with lipodystrophy, died before the age of 35; my mother and sister. The journey of living and coming to terms with my disease has been a arduous struggle on all aspects... I turned 35 this year, and I’m going strong (knock on wood, people!). I try to be the best patient I can be, working with my doctors and medicines, but everyone falls occasionally, as do I.
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April 2018

Ian's Story

I always knew there was something wrong with me from age 13, as I never looked like others, even family members as I am the only person in my family that suffers from familial partial lipodystrophy. I was unable to gain weight and was very thin and gaunt in the face during my teenage years. Others also noticed my fat wasting and as a result I experienced extreme bullying and judgements about my appearance from a very young age.
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Amanda's Story

I have been struggling with this disease for many years, and my perspective on life is viewed through the colored glasses of chronic illness and disability. That being said, I’m a very positive person and always try to look at the glass as half full. Thanks to the support of my parents, my mantra is “What doesn’t kill you, makes you stronger.” So it is very hard for me to look back and honestly admit how much I have lost as a result of this disease, and the prodigious toll it has taken on my life.
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March 2018

Cynthia's Story

This all started for me when I was 16, 5'5 tall and 110 pounds. At this time I was told that my triglycerides were over 550. I didn't know what triglycerides were at the time and nothing was done.
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Debra's Story

In Loving Memory: My name is Debra Self and I have the Dunnigan variety of Familial Partial Lipodystrophy.  I wanted to touch on something today so that hopefully it can help other people.
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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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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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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.