Columns

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…

As a kid, I found it difficult to bond with other children with muscular dystrophy (MD). As a young teen, I often compared myself to others — including those living with MD. The invisibility of my disease often made me feel like an outcast. The rarity of my type of…

The other day, I was sitting in Haute Cakes Caffe chowing down on a carnitas breakfast burrito, when an older woman sitting next to me said something that took me by surprise. “You have a really great outlook,” she said, as I motored up to grab a to-go box…

My experiences writing this column over the past year have been fabulous. But it was daunting at first to put pen to paper to capture what so many people feel. My first column talked about starting something new and the excitement this brings. But the reality is that the…