March 1 was my one-year anniversary with Bionews Services, the publisher of Muscular Dystrophy News. Defining a period in this manner allows me to see how far I’ve come in the past year. My columns have focused on a number of topics. In my column from May 2019, I…
On Saturday morning, Feb. 22, I awoke with excited anticipation of the day ahead. That day, I attended the Los Angeles Abilities Expo for the second year in a row. Attending the 2020 LA Abilities Expo was a different experience this year simply because I…
If we lived in a fair world, Duchenne muscular dystrophy would not exist. Unfortunately, life isn’t fair, and I was diagnosed with the muscle-wasting disease 18 years ago. Even with a bleak future, there’s still something I can do about it. I can refuse to…
In the coming days, a great deal of focus will be placed on Rare Disease Day, which is Feb. 29. And for good reason. Approximately 7,000 rare diseases affect up to 30 million Americans. That’s almost one in 10 people in this country. The National Institutes…
Many years ago, I wore a green wristband adorned with the words “energy for life.” This phrase helped me to promote awareness about my disease, mitochondrial myopathy. I wore the wristband every day until one day it disappeared. I scoured my room looking for my beloved accessory, but came…
Adults with Duchenne muscular dystrophy (DMD) should help younger generations through the difficult parts of growing up with a rare muscular disease. They need someone in a similar situation to look up to, relate to, and learn from. I recently met a high schooler who…
For those of you who follow my column, I have some good news: Sammy Eikahldit is back. My alter ego, Sammy, first appeared in my column on true accessibility for all. He returned a couple months later when we discussed how to effect positive change. Sammy has been…
The best relationships aren’t full of luxurious vacations and daily smiles and laughter. Long-lasting couples have been to hell and back together, growing closer and stronger through the storms. Ups and downs because of illness and vulnerabilities, along with the need for extra support, can test an interabled relationship. But…
Life with Duchenne muscular dystrophy is far from predictable. We can’t foresee how our bodies will change. When I turned 18 (I’m 23 now), I didn’t know that five years later, I would need help showering and getting off the…
As we finish the first month of 2020, I keep thinking about how time flies as I get older. There are many theories for this phenomenon. For me, it’s all in the math. When I was 10, a year was 10 percent of the time I’d lived on this…
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