Sometimes we need wake-up calls in life. They are near misses that tell us we need to make a change, approach a problem differently, or alter how we interact with others. These can take the shape of a car crash that tells us we need to pay attention and get…
Hawk's-Eye View - a Column by Hawken Miller
This week’s column will be slightly different than normal. I reached out to fellow Muscular Dystrophy News Today columnist Betty Vertin, who has three boys with Duchenne muscular dystrophy (DMD), ages 16, 13, and 11, to seek her collaboration. I asked Betty five questions about life with Duchenne,…
A conga line of people snaked through shaded outdoor tables as the setting Florida sun warmed their faces. For all the conga lines one can imagine, this one was slightly different — people in wheelchairs were also grooving to the music. They had Duchenne muscular dystrophy (DMD), and they…
The last time I traveled on my own without my parents was last May, when my friends and I went to Hawaii. While my parents did come with us, they kept to the hotel room and let us explore. Being away from the comfort of home made me realize I…
There are a lot of things to hate about Duchenne muscular dystrophy. Last weekend, I found myself uncontrollably crying while FaceTiming a friend as I was explaining why I wanted to be in a relationship before I lost the ability to move my muscles at all. It’s hard to…
When I went off to school at the University of Southern California (USC), it was the first time, like many other 18-year-olds, that I would be living away from home. It was an especially huge change for me because of my Duchenne muscular dystrophy and my reliance on my…
We throw around the word “community” a lot in the rare disease space, but don’t always think about what it really means and how it’s vital for patients, family, friends, and caregivers. I rarely see anyone in a wheelchair in public, let alone a power chair. Growing up, I didn’t…
When we think about fighting, we might imagine the Ultimate Fighting Championship ring, where men and women beat each other up in front of millions of fans. Or we might see soldiers firing machine guns, or Darth Vader and Luke Skywalker trading blows with lightsabers. Our minds probably…
Columns
The Power of a Duchenne Smile
We can all smile, but there’s one type of smile that shows genuine positive emotion and is nearly impossible to fake. The zygomaticus major muscle in the cheek pulls the lips upward while the orbicularis oculi around the eye activate, wrinkling the outside corners of the eyes. It’s true happiness…
Living with Duchenne muscular dystrophy has plenty of downsides, such as having to use a wheelchair and a BiPAP machine, dealing with fatigue, and wearing night splints, among other things. But if you’ve read my column for a while, you’ll know I like to look on the positive…
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