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Share: Having Duchenne muscular dystrophy gives me plenty of things to worry about, like scheduling doctors’ appointments on time, not knowing when I might lose my ability to do certain actions, and using the bathroom when out with friends, because I…
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Share: I recently started watching a YouTube channel called Yes Theory, which inspires people to “seek discomfort.” The cast of the video blog often go on trips to remote parts of the world, perform on the street, or push their bodies…
Share: My life has been quite busy lately. Between starting my full-time job at BioNews, helping produce two Call of Duty League YouTube shows, working on other freelance journalism projects, and managing my health, which gets progressively worse because of…
Share: Transitions are a part of life. We go through puberty as teenagers and our bodies change. We move out of our parents’ place to go to college or start a new job. We get older, some of us have…
Share: On April 1, I started full time at BioNews, the publisher of Muscular Dystrophy News Today, writing feature stories about the rare disease community. Since I first started writing articles in December 2019, my…
Share: I sometimes like to imagine a life in which I don’t have Duchenne muscular dystrophy, a progressive muscle-weakening disease. No boundaries would hold me in. I could travel anywhere I want and write an…
Share: This is the dirtiest column I have ever written because it’s about poop. And whether you love it or hate it, it’s an especially relevant topic to the Duchenne muscular dystrophy community. Sitting in a wheelchair…
Share: Kriki Cragwalker, a redheaded dwarf from the mountain city of Jagarz Dauk, grasps her enchanted, two-handed greataxe and is circled by a host of ancient green spirits with allegiance to the god Jani. She…
Share: If you are familiar with the disease Duchenne muscular dystrophy, it’s easy to tell if someone has it. Enlarged calves, a waddling gait, the use of a wheelchair, and in some cases, a puffy…
Share: On Feb. 19, I received my second dose of the Pfizer COVID-19 vaccine. According to the nurse who gave me the injection and clinical trial results from the biotech company, the vaccine is about 95% effective against COVID-19 within…
Share: Rare Disease Day, a global push for rare disease awareness, is less than a week away, on Feb. 28. As someone with a rare disease myself, I’ve heard the word “rare” quite a…
Share: In the last year, it’s been easy for me to coop myself up in my room and spend the entire day without stepping outside once. I’m either afraid of getting COVID-19 or I get…
Share: I’m a self-described gamer, and proud of it, but lately I’ve realized I’ve probably been playing too much. Two weeks ago, during online church services, we talked about fasting, including from things beyond food, such as social media and TV. That…
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