On the Road to Pompe - a Column by Dwayne Wilson

Dwayne lives in Southern California in the City of Irvine. Dwayne is a SoCal native but moved away in 1996 to experience Life in the Pacific Northwest. He moved back to Orange County in 2017 to be closer to family. Dwayne was diagnosed with Late Onset Pompe Disease in Nov 2018 when he was 50 years old. Dwayne has a passion for spreading awareness about Pompe disease and bringing hope and positivity to the community. You can find him at the beach or sporting events. Follow along with his column “On The Road To Pompe” as he shares his Journey.

To me, rare disease awareness sounds like zebra hoofbeats

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,…

The Travel Bug Has Infected This Pompe Warrior

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…

How I Make Pompe Disease Treatment Days Fun

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.