Columns

Question Everything: How to Ask the Right Questions

As I’ve described in my previous columns, knowledge is power. I feel very fortunate to have received my diagnosis of limb-girdle muscular dystrophy when I did. I was beginning physical therapy school and had just come to appreciate the power of questioning and research. That said, the topic of…

When Mom Is Tired, Caregiving Is Hard

I saw a meme today that said, “I need a day between every day to recover from the day before and prepare for the upcoming day.” I could not have identified with anything more today. If you haven’t guessed it yet, I am exhausted. I was a single caregiver and…

The Joy of Getting to Interview People for a Living

I started writing for my high school newspaper, The Bolt, when I was 17. Now 24, I’m telling the stories of people who make an impact in their rare disease community for BioNews, the publisher of this site. Over the last seven years, I’ve had the privilege of conducting…

My Son Is Living a Fuller Life Than We Ever Imagined

My oldest son with Duchenne muscular dystrophy, Max, starts his sophomore year in high school this week. He will be halfway through his high school education by the end of the school year. For a long time, I was afraid to look too far into his future. At diagnosis, a…

What Do You Know? Exploring the Questions We Should Ask

I wanted to expand on my last column by delving into the types of questions we should ask when presented with a new ailment, such as muscular dystrophy. I’d like to start with an anonymous quote: “It ain’t what people don’t know that hurts them, it’s what they know…