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.


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.


Diagnosed with LOPD at age 34

Jump to topics:

  • Emotional well-being
  • Physical activity
  • Nutrition


Diagnosed with LOPD at age 31

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


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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