To me, rare disease awareness sounds like zebra hoofbeats

Feb. 28 is an opportunity to spread news of our conditions to a global audience

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by Dwayne Wilson |

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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, information is available at the push of a button in the palm of our hands, or with a click of a mouse. To me, that’s an indication that now is the time to learn and spread awareness.

It seems that when I search the internet or social media, every day offers something to celebrate. It might be a type of food, such as National Doughnut Day (my favorite), National Pizza Day, or National Cheese Day. Or it could be about family, such as National Siblings Day and Grandparents’ Day. There’s even an International Left Handers Day.

But what about rare diseases? Do I really want to embrace and celebrate a rare disease that I was born with? That might seem almost akin to celebrating the purchase of a losing lottery ticket. All kinds of questions arise for debate when you discuss celebrating a rare disease.

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Here’s why

Although I wasn’t diagnosed with late-onset Pompe disease until I was 50 years old, it’s always been a part of my life. It’s in my DNA. When I found out that Pompe disease is a rare disease, the month of February became so much more meaningful to me. I want to share the story about my journey with others. I want others to know that they’re not alone. If my story can encourage someone else on their path, then it’s a blessing.

On Feb. 28, the world will celebrate Rare Disease Day. It’s a day when people and families living with rare diseases share their stories. It’s about being part of a community and showing support for one another. It’s a time for companies and organizations to use their platforms on social media to spread awareness about rare diseases. It’s a day when the entire world comes together to raise that awareness.

Rare disease patients are not the horses sitting quietly in the stable. We’re the zebras marching to the hoofbeats of our unique abilities and qualities, the ones that make us rare. We never give up. We stand out in a crowd and make the loudest noise.

Having Pompe disease makes me a zebra. I’m not an ostrich sticking my head in the sand. I have a voice and a story that deserves to be heard. It’s one that I can share with others to help them on their journeys. Rare disease awareness matters to me to make a difference in the world.

A black-and-white photo shows a white, late middle-aged couple standing side by side in front of a white wall. The man, wearing a goatee, glasses, and a T-shirt that says "Cure Pompe" and "50," smiles while standing next to the woman, who also is smiling and wearing a zebra-print outfit.

Dwayne Wilson and his wife, Jean Gibson, celebrate Rare Disease Day in 2022 with their zebra outfits. (Photo by Dwayne Wilson)

On Rare Disease Day, people are encouraged to “show your stripes,” to wear the colors of rare diseases. Post your photos on social media and tag your loved ones, friends, and colleagues to show your support for rare disease patients. I encourage all my friends, family, and readers to share your zebra photos on social media, with the hashtags #showyourstripes and #ontheroadtopompe. You can even tag me — @smashingpompe — to show that you care for rare as we travel “On the Road to Pompe” together.

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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