22 February 2017

Kayce's Story

Kayce"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. I'm happy to share that last summer was the first summer I wore a short dress and shorts in public. Having the support and understanding of others with FPLD has given me the courage to finally enjoy the warm weather and cool water on my legs for the first time. I thank all the women from Lipodystrophy United for that!

I was diagnosed at the age of 27, after nearly 10 years of untreatable diabetes and a number of other things. I was treated with the wrong medications and fought for doctors to l​​ook for the answers. My husband was completing his nursing degree and came across a description of the different forms of Lipodystrophy in one of his books. We went to several doctors before finally getting one to listen. By this time my body was shutting down and the diabetes was taking over. I was on an insulin pump that did little help if any. I was lead by my endocrinologist to look for help at the University of Michigan. This is where I found my guardian angel Dr. Elif Oral. She took me under her wing and treated me for the following problems: Diabetes, Polycystic Ovarian Disease, Carpal Tunnel, Myopathy, Neuropathy, Gastroparesis, Liver Disease, Sleep Apnea, High Triglycerides, Degenerative Disks in my back, Atypical Migraines, Diabetic Retinopathy, and Pre-Glaucoma. Most of all she started me on a Leptin Study. After years of feeling like I was living in a fog, I started to be reborn. Almost 5 years after receiving the help, I am happy to say that I feel better and I know I am alive because of her. I hope to someday help other people, and return the favor.

As for now I try to keep up with new requests to join "Living with Familial Partial Lipodystrophy" on Facebook and get to know each and every one of you online. With my health better, I am now able to enjoy life and travel with my nurse husband Gabe, of 10 years, and our 2 year old Doberman Kullen. I still live with many chronic illnesses, but it is just part of the disease that you just learn to live with.

I hope to meet with all of you courageous and strong women out there :) Stay Strong! We are all here for you! Please remember you are NOT the only one!"

~ Kayce Gordon, USA

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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.