Milestones mean more now that I’m living with Pompe disease

Columnist Dwayne Wilson is celebrating his 55th birthday in style

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by Dwayne Wilson |

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Today, March 17, is the day to celebrate all things green and Irish. Look for a four-leaf clover and have some Lucky Charms for breakfast because they’re “magically delicious.” Drink some green beer and have corned beef and cabbage for dinner. Search for the pot of gold at the end of the rainbow and find a leprechaun.

But St. Patrick’s Day means so much more to me: It’s also the day I was born, the day my Pompe gene mutations — c.-32-13T>G and c.1796C>A — began to alter the course of my life. I am grateful to still be alive and have reached the double-fives.

A close-up photo of a man's socks, which are green and covered in clovers.

Dwayne’s new “lucky charms” socks for St. Patrick’s Day. (Photo by Dwayne Wilson)

Looking back at my childhood, I often wondered if something was off with me. I couldn’t do a pullup, pushup, or situp. I couldn’t run and was awkward and uncoordinated. During my high school years, I felt weaker than the other boys. I had no upper-body strength, but my legs were strong enough to play soccer. Two of my liver enzymes — alanine transaminase and aspartate transaminase — always showed elevated levels on lab reports, but nothing was ever discovered.

As I grew into adulthood, life went on. I got married, switched jobs, had kids, and moved around a few states. I started to feel like I should stop celebrating my birthday and having parties. Who wants to grow older, anyway?

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A new perspective

In November 2018, I was diagnosed with late-onset Pompe disease at age 50. This form of the disease can manifest during childhood or adulthood, and symptoms, as well as their severity, can vary widely. There is no cure, but enzyme replacement therapy can help slow disease progression.

After my diagnosis, there was a shift in my thinking: It was time to start celebrating my birthday again to honor another year of life.

Soon, I started treatment, added a BiPAP machine to my sleep routine, and scheduled physical therapy appointments to work on my flexibility and balance. I created a mindset of hope and positivity and was ready to write the new chapters in my book of life.

A man stands with his back to the camera and holds his arms straight out to the sides. He's wearing a black T-shirt that reads "Pompe Champ 17" on the back in green lettering.

Dwayne’s new “Pompe Champ 17” T-shirt for his St. Patrick’s Day birthday celebration. (Courtesy of Dwayne Wilson)

Five years later, I’m still going. I get to celebrate my 55th birthday today while on vacation. My wife and I flew north from Southern California to visit our boys and grandchildren in Spokane, Washington. Our youngest son, Devin, turns 18 today as well. I get to hold my second grandbaby, Alayna, who was born on Christmas Day, for the first time. This grandpa is going to babysit, party, celebrate with family, and live life to the fullest.

Tonight, we’re going to a Spokane Chiefs hockey game to celebrate the two birthdays in a party pod. Everything will be green today! There’s nothing like making memories with friends and family.

Life is about having adventures and experiences. I am living my best Pompe life and celebrating every milestone. I look forward to many more “On the Road to Pompe.”

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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