Three years ago, my life was changed forever. Three years ago, I walked out of a doctor’s office, got in my car and sobbed. Three years ago, my image of what my future looked like was shattered.
Today, my life is still changed forever. Today, I leave doctor’s offices feeling confident and grateful. Today, my image of my future looks uncertain, but there is so much hope.
Three years ago today, I was diagnosed with fascioscapulohumeral muscular dystrophy (FSHD). It took me a long time to remember how to pronounce it, spell it, and for my phone to figure out it wasn’t misspelled. It’s a rare form of muscular dystrophy I was born with, a genetic disease. My body produces a protein called DUX4 and this protein destroys and kills muscle. And like all forms of muscular dystrophy, it’s a progressive disease. I will keep losing more muscles, and will not get them back. There is no cure. Yet.
Hard challenges are put in front of us all the time and we have the choice to look at them as obstacles or fuel to propel you further on your path. My FSHD diagnosis laid me low for a while. It left me on the side of the road beat up and broken. But I stood up, dusted myself off, wiped away the tears, and used this diagnosis and this disease as fuel to make me a better person. This disease won’t break me. I’m stronger than FSHD.
Three years later, I find myself with a greater sense of power and purpose with FSHD. I may not know what lies ahead for me, but all I have to do is look to my wife and my three children to remember who else I’m fighting for. All I have to do is connect and reach out to all the friends I’ve met who have FSHD to remember the collective strength we have.
Going from powerless to powerful has been quite the journey. I’m not broken, I’m not helpless.
I am humbled, honored and encouraged.
I AM stronger than FSHD.
The money I'm raising by participating in this Walk & Roll is supporting programs and funding research that will directly impact me and other people living with FSH Muscular Dystrophy (FSHD).
Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. It affects an estimated 1 in 8,000 individuals. It affects everyone differently, but over 70 percent of patients experience debilitating pain and fatigue. There is no effective treatment or cure—but there is hope. I'm committed to making sure that no one faces this disease alone.
Please visit the FSH Society website (fshsociety.org) to learn more about FSHD, ways to get involved, and everything that is happening!
Thank you for your support! - Dave