I feel strange not writing about the pandemic crisis in this column, but we’re already bombarded with information about it, and it appears we will deal with these issues for a while. So, I will be back in two weeks to discuss how I am living through the crisis. I…
I never have an answer to the questions, “Where do you see yourself in five to 10 years?” or “What are your future goals?” Mitochondrial myopathy is a rare and little understood disease, meaning I don’t know what lies ahead with my health. This can…
This week, I celebrate my one-year anniversary of writing columns for Bionews Services. A lot has happened in that year: I graduated from college, interned at The Washington Post, and secured a full-time newswriting position at Bionews. I’ve laughed a…
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…
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