I have clear memories of listening to my fourth-grade friends talk about what their “boyfriends” got them for Valentine’s Day, or whispering between one another during class about who liked whom. My hope of one day having a stereotypical teenage romance carried into high school, but dwindled as…
Columns
As a journalist and person with Duchenne muscular dystrophy, I have a dual purpose. I want to inform people and hold those in power accountable. I also want to show that having a disability doesn’t detract from my career goals. U.S. National Disability Employment…
Over the last couple of years, I’ve had opportunities to meet and befriend more adults with Duchenne muscular dystrophy. Whether we’ve found one another through CureDuchenne events or a common love for video games, my network within the…
As I’ve started relying more on people for things I used to do on my own, it’s become easier to ask for help without feeling like a burden. This toxic thought has been a challenging mental hurdle, but it’s one we all deserve to get over. With compassion,…
A few unfortunate circumstances recently have left me mentally exhausted by the endless recurrence of ableism. It feels as though ableism lurks around every corner, waiting for the opportune moment to rain on my sunshiny parade. Arming myself with an advocate seems necessary for braving the outside…
The world can be overwhelming thanks to the deadly coronavirus pandemic, especially for someone dealing with muscular dystrophy. On top of the daily struggles — lack of mobility, physical exhaustion, and steroid-related side effects — there’s also the worry of getting sick and feeling the virus’s financial…
Most mitochondrial myopathy patients rely on sleep as therapy for our disease. Yes, rest can be effective at regenerating lost energy, but there’s nothing comparable to a restful night’s sleep or a deep nap. Without proper sleep, our bodies can rapidly deteriorate, resulting in…
When I was younger, I couldn’t imagine losing my ability to get up from the ground, run, or play soccer. Now I can’t imagine losing my ability to walk. At 23, I’m still able to walk despite having Duchenne muscular dystrophy, and I’m incredibly thankful for…
Living with a disability often means I’m exposed to people’s true colors. This can be both positive and negative. My disease has familiarized me with the cold shoulders of family members and the condescension of doctors, but it has also strengthened my gratitude for the people in my…
Columnist’s Note: Dear reader, this will be my final column at Muscular Dystrophy News. The past 15 months have been wonderful, but I have decided to take time away from writing to work on a variety of things, including the LGMD2L Foundation. Next year will bring us many opportunities…
Recent Posts
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- A winter blizzard had me cooped up at home for days
- New Phase 3 trial of Duchenne gene therapy SGT-003 to begin dosing
- The rule of 10 helps me navigate bad days with LGMD