Spreading Awareness About Pompe, One T-shirt at a Time
A columnist discovers a way to unite his love of sports and rare disease advocacy
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 late-onset Pompe disease, I thought it’d be cool to advocate on my T-shirts or jerseys of my favorite teams.
It started when a good friend of mine recognized my birthday by giving me a Gonzaga Bulldogs basketball shirt with “Pompe” on the back and the number “50.” I was diagnosed at age 50, so he thought it’d be a good number to use. My next shirt — a gray Miami Dolphins T-shirt — says “Cure Pompe” on the back with another “50.” Then I got an orange Dolphins shirt that says “Cure Pompe” with the number “4” on it; as I would say, we need a “Cure 4 Pompe.” That’s also become a hashtag I use on social media.
I followed that up as the seasons changed from football to hockey with a black Anaheim Ducks T-shirt that said “Cure 4 Pompe.” Then came baseball season and a red Los Angeles Angels T-shirt saying “Cure Pompe 50.” When life returned to football season the next year, I had a new idea: I “smashed” Pompe with the words “Smash Pompe 00” on an aqua Dolphins T-shirt and arms modeled after the Hulk.
I got my last clothing message when I became a patient speaker for a biotechnology company. That shirt read “Pompe Champ 1” and “Pompe Champ 68,” significant because I was born in 1968. It felt good to have all these T-shirts to wear, not only at sporting events but also to restaurants, the beach, grocery stores, and other places in my everyday life.
A great ice breaker
You might be thinking, what does wearing a T-shirt have to do with bringing awareness to Pompe disease? Sometimes it’s hard for me to talk to a total stranger, let alone about a rare muscle weakness disease that is eating my muscle cells from the inside out. I have an invisible disability, and sometimes people cannot see how I’m feeling.
I’ve had numerous occasions when people see my shirts and ask if “Pompe” is a person on the team. Or they might ask if my name is Pompe. Or maybe they’ll ask what Pompe is all about. Wearing these sports and advocacy shirts, therefore, is an ice breaker. It helps to bring up Pompe so I can start talking about it to others.
The shirts have even gotten me interviewed by a TV sports reporter before a Gonzaga men’s basketball Sweet 16 game in 2019, as well as a pre-tournament virtual interview in 2021. It’s exciting to intertwine my love for sports with my rare disease. Cheering on my favorite sports teams while representing Pompe motivates me to have a positive outlook on life.
Last weekend, I went to the Miami Dolphins-Los Angeles Chargers football game at SoFi Stadium in Inglewood, California, a Los Angeles suburb. When I used my electric wheelchair (which I call the Dolphinator) to zoom to the restroom, a gentleman stopped and, having read my T-shirt, asked if “Pompe Champ” was my name. I told him no, but I talked to him about Pompe. That makes one more person who knows about the disease. Who knows where it may lead, but now he may be able to spread awareness, too.
That would be a great day!
I continue to spread awareness for my rare disease by wearing my T-shirts in public, working to educate others. Sometimes advocacy is as simple as this, and it’s easy for anyone to do and a way to be part of something bigger.
This Pompe Champ has a passion for spreading awareness about my disease, bringing hope and positivity to everyone, and making a difference in this world — one Pompe T-shirt at a time.
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.