For US residents only
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.
Patrick
Diagnosed with LOPD at age 34
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.
Patrick
Ohio
Diagnosed with LOPD at age 34
Jump to topics:
- Emotional well-being
- Physical activity
- Nutrition
Ryan
California
Diagnosed with LOPD at age 31
Ryan discusses the role of nutrition in his Pompe management plan with Surekha, a Registered Dietitian.
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.
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Resources you can rely on
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