On the Road to Pompe — Dwayne Wilson

This past week, my best friend, Joe, and his son Dane came from Montana to visit me in California. I decided to take Monday off from work to meet up with them so I could watch Dane, an adventurous young man, as he went rock climbing. In fact, he’s been…

Growing up, I got all my information from newspapers and encyclopedias. I used a typewriter to send letters to friends and family about special occasions. It seemed like it took forever. Then came computers, which changed everything. Information was now accessible as fast as my dial-up modem could connect. Today,…

Sometimes I wonder who designed spaces that are labeled accessible. Were the engineers or architects disabled? Did they actually understand the needs of wheelchair users, or did they simply do the minimum needed to comply with the Americans with Disabilities Act (ADA)? Was a disability plaque attached just for…

For me, getting diagnosed with late-onset Pompe disease was a relief. Although there’s no cure, treatment is available to help slow disease progression. After starting treatment, I wondered what my life would look like. Would I have to stay home? How long would I be able…

Growing up, I was mostly a healthy, overweight kid who seldom got sick. As an adult, I’ve had a career in the office equipment industry for over 30 years and have always had health insurance through my employers. No matter what type of plan was offered, I’d always pick the…

For 25 years, my vacations had always revolved around visiting family. My wife and I would pack up the minivan and take our four boys to Southern California to visit Grandma. We did all the fun things, such as visit amusement parks and the beach. But the thought of traveling…

I made it through another year living with late-onset Pompe disease. That puts me at four years on this journey. As 2023 kicks off, I’m starting year five. I’ll be another year older and hopefully wiser come St. Patrick’s Day. We finished the holidays with a big surprise.

After receiving my diagnosis of late-onset Pompe disease, it felt like a weight had been lifted off my shoulders. Finding out that I had a rare disease with a treatment was amazing. At the time, I don’t think I comprehended the fact that those treatments would last forever.

I like to say that I’m a walking billboard for Pompe disease advocacy — not just by the way I walk, but by the messages on my clothes. I’m a huge sports fan and go to a lot of sporting events, so after getting my diagnosis of…

It’s been four years since I was diagnosed with late-onset Pompe disease. At that point, I felt like my life was over. There were still so many places to go, events to attend, things to see. I thought I’d never be able to experience all I hoped to do…

In some alternate reality, receiving my diagnosis of late-onset Pompe disease would’ve made all my problems go away. But in this universe, my rare disease is only one piece in the puzzle of my life. Six months before my diagnosis, our oldest son, Adam, passed away at age…

For my diagnosis day celebration last week, I indulged and had a doughnut. We also celebrated Thanksgiving early with some apple and pumpkin pie. I really do enjoy eating desserts. But when I received my diagnosis of late-onset Pompe disease four years ago, I learned I needed…