POMPE DISEASE ADVOCATES HAVE A UNIQUE PERSPECTIVE TO SHARE
Learn how Maddie and Emma take on Pompe disease every day.
Pompe disease can look different for everyone. But one thing remains true for both you and others in the community: you have Pompe disease, it doesn’t have you. See how Maddie and Emma don’t let their diagnosis define them.
Maddie isn't letting Pompe take away the things she enjoys most in life.
“Hold on to your passions and the things that bring you joy. Pompe’s not going to take those things away from you.”
— Maddie, diagnosed with Pompe in 2009 —
Emma is continuing to learn more about Pompe so she can be her own best advocate.
“My biggest piece of advice would be to advocate for yourself, which in Pompe means educating yourself about your disease.”
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