A support system is crucial to managing life with Pompe disease

Reconnecting with an old acquaintance, thanks to glycogen storage diseases

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by Dwayne Wilson |

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Back in high school, I had a few friends and many acquaintances. One of those acquaintances, Scott, was close to two of my good friends, Rick and David. Scott and I never hung out, but I knew who he was. After graduation, all of my acquaintances, including Scott, seemed to fade away.

When I was diagnosed in November 2018 with late-onset Pompe disease, I turned to social media to find others who have Pompe disease. I joined Facebook support groups and began learning more about this rare disease and connecting with other patients.

I felt like I’d found my tribe. Hearing from others who knew the journey and had received treatment gave me hope and courage. I decided it was time to share my diagnosis with all of my family and friends. I took to Facebook to let the world know that I have Pompe disease.

A group of five people smile for a selfie while sitting in a stadium at a baseball game. There are two couples, Dwayne and Jean, and Scott and Maritoni, as well as Scott and Maritoni's son, Peyton. Dwayne and Jean are wearing red Angels shirts, and all appear to have styrofoam containers of food in their laps.

From right, Dwayne, his wife, Jean, Scott’s wife, Maritoni, Scott, and Scott’s son, Peyton, enjoy a Saturday night at the ballpark. (Photo by Dwayne Wilson)

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How long before my diagnosis was I experiencing symptoms of Pompe?

All of the feedback was amazing, positive, and supportive. Through all the comments and people who were tagged, I got a message from Scott.

I discovered that Scott has glycogen storage disease (GSD) type 1, also known as von Gierke disease, and has been receiving infusions for it since childhood. Because Pompe disease is another term for glycogen storage disease type 2, we immediately understood what the other was going through. Then we laughed that we hadn’t known each other better during high school. There we were, some 32 years later, reconnecting and becoming close friends.

When old acquaintances become new friends

My rare disease diagnosis helped me connect with an old classmate and establish a new friendship with him. Scott had to have a liver transplant about 21 years ago, and last year, he had a kidney transplant. He’s been fighting this battle his entire life. He’s an inspiration to me.

Two men stand side by side holding up matching blue T-shirts. The man on the left, who has glycogen storage disease type 1, has a shirt that reads "GSD 1" in the style of a sports jersey. The man on the right, who has glycogen storage disease type 2, has a shirt that reads "GSD 2."

High school buddies Dwayne, right, and Scott hold up their new T-shirts to spread awareness about glycogen storage diseases. (Courtesy of Jean Gibson)

As I manage and treat my Pompe disease, I’m surrounded by a support system that includes my wife, family, and many friends, as well as doctors and physical therapists. Scott is now a part of that team, and our families do many activities together.

We both like sports, so we often hang out at the ballpark to watch the Los Angeles Angels play baseball. Or we freeze at the Honda Center in Anaheim, California, as we watch the Ducks play hockey. Then there are the times we simply hang out and eat doughnuts on the beach or meet up for dinner. Having a friend like Scott has been a blessing to me. We are GSD warriors.

In the Dr. Seuss books, there are characters called Thing One and Thing Two who spread mayhem. I, however, prefer to spread awareness about Pompe disease, so I had Angels T-shirts made for Scott and me that read “GSD 1” and “GSD 2.” Now we can both spread awareness about our rare diseases while having fun at baseball games.

Two men stand with their backs toward the camera. They're wearing matching blue shirts that say "GSD" at the top, while one man's shirt features the number 1 while the other's features the number 2.

Two GSD warriors ready to spread awareness, one T-shirt at a time. (Courtesy of Jean Gibson)

Living with a rare disease has its struggles. There are good days and bad days. But when you have a good support system around you, life feels less gloomy. Spending time with my friends always improves my mood and lifts my spirits.

I have known Scott for 40 years now. What was once just another acquaintance is now a lifelong friend. It’s funny how things come full circle. Traveling “On the Road to Pompe” has introduced me to a world of friends who have supported and encouraged me along the way. How much longer will this journey last? No one knows. But it’s always more fun traveling with friends.

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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