Meet Pompe disease advocates and other people like you

A Pompe disease diagnosis can be life-changing. But it’s important to remember that there are others who can relate to your experience. The stories below feature real people living with Pompe who are making an impact in the community and beyond.

Hear stories from people with Pompe

Pompe disease may affect everyone differently, but it can still help to hear the perspectives of others who are in your shoes. Learn about their experiences and watch the stories of other people living with Pompe disease by clicking below.

Mike

(1957-2022)
A friend to the Pompe community

Jump to topics:

The value of assistive devices
Maintaining your passion
Emotional well-being
Advice for the community
Learn more about Mike's story Arrow Icon

Vanessa

Florida
Diagnosed with LOPD at age 54

Vanessa discusses the role of her physical activity in her Pompe management plan with Jenna, a physical therapist.

Ryan

California
Diagnosed with LOPD at age 31

Ryan discusses the role of Nutrition in his Pompe management plan with Surekha, a Registered Dietitian.

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Resources you can rely on

Explore advocacy organizations, download educational materials, and discover financial assistance resources.