Twenty eight years ago I was diagnosed with fascioscapulohumeral muscular dystrophy (FSHD). It’s a genetic disease. I was born with it. My body over-produces a protein called DUX4 and this protein eats, destroys and kills muscles. And like all forms of muscular dystrophy, it’s a progressive disease that keeps killing muscle and the muscles that the disease kills will never be healthy. There is no cure for FSHD.
It’s a slow disease that gradually robs people of muscle in their face, shoulders and upper body. It takes things away like being able to get dishes down from the top shelf, wash your hair, the ability to smile and other activities most people take for granted. For many of us, it progresses to legs and feet (which mine has) and begins to weaken and kill those muscles. 30% of people with FSHD end up in wheelchairs.
The severity of this disease and the rate of progression is unique to each FSHD patient. The rate of progression for me over the past 2 years has been downright frightening.
One of my daughters has tested positive for this disease. Her children now have a 50/50 chance of also having the disease.
This has not been fun. The last two years have been difficult for me and my family.
I recently retired and now want to devote my time and energy to help find a cure for this horrible disease. I started the Atlanta Chapter of the FSH Society last year as the first step in my journey to cure FSHD.
Our goals for the chapter include growing awareness for this disease as well as fund raising activities to help fund research for a cure.
Please join me in my journey to find a cure. I’d be so grateful if you would walk with me on September 29, 2019 or donate (or both!) Together we can help fund research to cure FSHD Muscular Dystrophy.
Thank you in advance for your support!
Please visit the FSH Society website (fshsociety.org) to learn more about FSHD, ways to get involved, and everything that is happening!