I didn’t know many kids with Duchenne muscular dystrophy growing up. Everyone around me was physically able; I was the only one who couldn’t keep up. Now, as I’ve gotten older, I understand the importance of finding friends who have the same disease. When I meet someone new with Duchenne, we bond over our shared struggles and exchange coping tips with each other. I feel comforted by the knowledge that I’m not alone with this disease.
Thanks to an UberWAV ride to Virginia, I recently visited family friends for dinner and bonded with two young men, who are close to my age and have Duchenne. It was a sight to behold: the three of us in our Permobil F5 wheelchairs maneuvering through the house toward a table on the deck. What it looked like on the outside was less important than what I felt on the inside. Among my friends, I didn’t feel like an outsider. The three of us enjoyed a dinner of barbecued steak and vegetable dishes, a social gathering similar to one that other 20-somethings would attend on a Saturday night.
Three people with Duchenne attending a dinner party together does not occur often, but it should happen more frequently because everyone benefits from these communal events. A recent BioNews Service meetup included a whopping five wheelchairs. Whether you’re in a wheelchair because of Duchenne, SMA, or cerebral palsy, we all have similar stories to tell, like about a door that didn’t have a push plate, or when someone dropped one of us on the ground, or when a 7-year-old asked, “What’s your problem?”
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If we all have Duchenne, the commonalities add up. We have much to talk about and learn from each other. At a CureDuchenne “Futures” conference near Boston, Massachusetts, last November, I had a chance to meet other guys who have Duchenne. One of them had the ingenious idea to attach a zip tie to his chair and use it as a water bottle holder. I observed another raising his chair while moving — I tried that action and found it to be efficient. A high schooler blew me away when he told me about his theater performances in his wheelchair.
These connections are vital to us. Knowing I’m not alone makes it easier for me to navigate the everyday hurdles. It’s a group effort even if we don’t see each other. I’m making it my goal to develop and nurture these relationships, and you should, too.
As I meet others with Duchenne, I recognize the possibilities. I see their drive to pursue their passions despite what their genetics dictate. If they can do it all, then I can too.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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