23 February 2017

Marilyn's Story

Marilyn"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. I always knew that there was something wrong. The years of uncertainty of my body grew worse over the years. I had certain moments that told me that something was off. Complications during simple surgeries, cholesterol sky rocketing along with my blood pressure in my 40's, and the obvious other things, should have been enough for my doctors to look for an answer and help. In my 50's I developed diabetes, that wasn't the worst part for me though. My demon from the FPLD was the extreme hyperactivity and anxiety. I spent most of my life working too hard. The job was never good enough or finished. When the job was complete, I would lie awake at night worried it wasn't good enough. This feeling has only raged on more extreme as the years passed. Thank God for the loving support and understanding from my Husband Jim of forty years.

The Lipodystrophy came from my father, Keith. When he passed 14 years ago, we had no idea why he spent most of his adult years in pain. Honestly we all thought he was a hypochondriac and a complainer. It wasn't until we learned about our disease that we finally understood what the problem was over his lifetime. We now only hope that he is watching us from above and now understands.

My sister who is 5 years older than I was diagnosed last month with a mild form of the FPLD. She has decided not to worry about any special treatment for now. She feels that she is too old to start to treat her problems. I was in pretty rough shape when I started the Leptin therapy in 2008. I no longer take 20 some daily meds along with insulin. That is a blessing. I hope someday soon the Leptin will be available for everyone to use. I believe that it has saved my daughter’s life and helped mine immensely.

I'm now retired from many jobs, most in the healthcare field. I have finished remodeling my home in Marquette, Michigan. I spend a lot of my time walking my 8 year old Doberman Greta Garbo, riding motorcycles with my family, working in my giant flower garden with my daughter, and spending time with family and friends. I hope to someday soon become a Grandmother to children rather than to just 3 grandpuppies."

~ Marilyn Bucholtz, Marquette, Michigan, USA​

Related

You need to login in order to comment
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.