Why I Celebrate the Day I Was Diagnosed With Pompe Disease

A columnist reflects on four years with late-onset Pompe disease

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by Dwayne Wilson |

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As a society, we celebrate birthdays, anniversaries, and births. Some celebrate when their son or daughter goes to college or gets married. Others might do a happy dance when their team wins the World Series or Super Bowl.

Personally, I celebrate the day I was diagnosed with a rare disease. That day changed my life forever, altering the trajectory of my future. It started me down a path I never knew existed.

This column is very special to me because tomorrow is the four-year anniversary of my diagnosis day. I was diagnosed with late-onset Pompe disease on Nov. 19, 2018, at age 50. Now I spend the day celebrating my journey and reflecting on all the positive changes that have enriched my life.

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When You Know Before You Know: The Road to My Pompe Disease Diagnosis

When I received my diagnosis, I could have let it tear me down and dwell in the pit of my soul. I could have let the darkness surround me, turning my diagnosis day into my doom day. Instead, I looked to the sky, to sunshine and hope. I decided that a Pompe diagnosis wasn’t the end of my life, but a new beginning. I’d just need to learn how to do things differently and think outside the box.

I wasn’t going to let the disease define me, so I grabbed the bull by the horns and took charge. I told everyone I knew that I may have Pompe, but Pompe doesn’t have me. It became my passion to spread hope and positivity. I celebrate every win, no matter how big or small, and I smash Pompe every day!

A man smiles and poses for a photo while wearing a blue T-shirt that reads "Smash Pompe"

Dwayne “The Doughnut King” Wilson celebrates ahead of his diagnosis day on Nov. 19. (Courtesy of Dwayne Wilson)

The past four years have been the most fulfilling and rewarding years of my life. I’ve made so many new friends and am blessed to have met families and patients from all over the world. My wife often says I got Pompe so I could have more friends!

Being “On the Road to Pompe” has led me into the unknown and opened doors for me. I’ve participated in a clinical trial, become a patient speaker for a biotechnology company, and participated in round-table discussion groups.

I’m lucky to have been interviewed twice about living with Pompe disease as a fan of the Gonzaga University men’s basketball team. I’ve also shared my story for Rare Disease Day and contributed to the Perspectives of The Pompe World website. I stepped outside my comfort zone and became a columnist for Pompe Disease News.

I’m going to celebrate my diagnosis day in the best way I know how: with doughnuts! My friends know that I love celebrating special occasions with doughnuts. They call me “The Doughnut King” and think about me every time they eat one.

Tomorrow, I will bring doughnuts to the clinical research center where I’m a patient and share them with the nurses and medical staff who take such great care of me. I am thankful for all the nurses who have stuck a needle in my arm, hooked me up to an IV, and administered my enzyme replacement therapy. I’m also grateful for the friends and family members who support and encourage me on my journey.

I celebrate my diagnosis day because it changed my perspective on what’s important and taught me to stop and smell the roses. Life is about making memories with friends and family. Cherish today because tomorrow is not promised. Live life to the fullest and do what makes you happy.

After four years On the Road to Pompe, the fun and adventures are just beginning. Let’s celebrate life together. Go on, you know you want to eat a doughnut for me!

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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