I believe that many adults living with rare diseases can and do become experts in their conditions, sometimes more so than healthcare professionals. With respect to my own journey with limb-girdle muscular dystrophy, this point became particularly clear when I had a near-death experience in early 2024. Several types…
In September 1995, I began my first teaching job at a New Hampshire public middle school instructing students about band instruments and music. At the time, I was 10 years into my diagnosis with Becker muscular dystrophy. I wouldn’t be rediagnosed — this time, correctly — with…
Living happily with limb-girdle muscular dystrophy, as I do, requires patience, a positive attitude, and a good support system of family, friends, and a professional care team. But I’ve learned there’s another huge component for me to succeed: planning. Abilities that able-bodied people take for granted often require well-thought-out…
I recently penned a column that took a surface look at the history of the disability movement in the United States. As many readers pointed out, my list of world changers and their accomplishments was far from exhaustive. I’d like to share another small part of the movement that…
This August will mark 40 years since I was diagnosed with what we eventually discovered was limb-girdle muscular dystrophy. Though it’s taken me many years to accept my condition, it’s progressed slowly over the past four decades — and in that way, it’s somewhat akin to the…
Each of my writings in this column has focused on living life with limb-girdle muscular dystrophy. While the mission of Bionews, the parent company of this website, includes sharing what it’s like to live with a chronic progressive condition, I believe it’s also paramount to share other aspects of…
A close friend of 30 years recently asked what my life was like before I was diagnosed with limb-girdle muscular dystrophy. When I met this man, we were both in college, studying music and playing drums. It was 1991, and I’d been diagnosed with muscular dystrophy for only…
“ICE” is a widely used acronym for “in case of emergency.” In today’s fast-paced world, many people have ICE contacts on their phones and folders on their computers that tell others who to call in the event of an emergency. Those of us living with chronic illness can and…
I’ve been married for 11 years. Before then, as I grew up with what I eventually discovered was limb-girdle muscular dystrophy, I learned a lot about life, perseverance, and relationships. During my 20s, I had long relationships with a couple of women with whom I thought I’d possibly spend…
In August 1985, I was diagnosed with Becker muscular dystrophy. At that time, there was no genetic test for the disease, nor DNA sequencing of the blood. Instead, I underwent a muscle biopsy on my left thigh and calf, the tissue was sent for pathology, and the medical…
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