At 45, I’m aware of the many turns along my Duchenne MD path

In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight, or read the full series.

I’m DJ Kimble, and I have Duchenne muscular dystrophy. I’ve just turned 45, an age that I honestly can’t believe I’m even saying. If you know and understand Duchenne, you know that my age is something that, even just less than a decade ago, seemed impossible.

I live at home in West Virginia with my parents, and I have a sister and a brother. My Duchenne comes from a spontaneous mutation; there’s no family history of the disease. My diagnosis was typical. It began with parents noticing something not quite right, a hesitancy among doctors, then tests, then their validation. Duchenne has many effects, many unknowns, and a life limited by time.

DJ poses for a photo on his deck in West Virginia. (Courtesy of DJ Kimble)

As I’m writing, I can’t help but remember my life as a child, growing up with this disease, the challenges I faced, and how much I wanted to be like everyone else, to fit in. But mostly, maybe, I just wanted to feel less alone on my journey.

As I’ve listened to my friends living with Duchenne, that part of our lives is far more similar than different. We’re a community, and we need to focus much more on those aspects of our life. Sure, the care matters just as much, but maybe we’re missing something.

Jump forward to today. I’m still here somehow, in a place I never thought I’d be, with a second, maybe a third chance at life, doing things I never imagined I’d have the courage to do. I inspire others, providing hope to others living with Duchenne, as well as our families and friends.

I help just by sharing my story — the good parts, the great parts, the OK parts, and the terrible parts. I share my challenges, the many times I found myself isolated and alone, just wanting my disease to no longer be. I share how I wanted to find a way through to discovering who I truly was and who I am today.

And by fulfilling what I see as my responsibility to do my part, I pave the way for those who will ultimately follow us. I use my passion for advocacy and willingness to be honest with myself, with others, with policymakers, and with society as a whole. That lets me share what we need and what we want; to be the change, to demand the change. If we shy away, then who will see it through?

Getting to where I am today, accepting the life that I have, wasn’t easy, and honestly, it still isn’t easy. It was, for far too long, a nightmare, a nightmare that stole who I was, that prevented me from really living. I lost almost every connection, almost every relationship, and almost my need for life. But somehow my struggles allowed me to fully understand what makes me tick, what drives me to continue living, despite all the challenges that Duchenne has placed in my path.

Like many of my friends and many adults living with Duchenne, my path was not straight and didn’t always move forward. For me, there were stops and starts, ups and downs. If life did follow a straight path, if everything that happened was planned, how would we ever understand our abilities to overcome, to know what is important to us in life, what we need to be happy, to know that we’ve done our best?

For me, though, my life doesn’t yet feel complete. I believe I will, in the end, find completion, not despite Duchenne, but because of it.