Mark Tarnopolsky, MD, discusses what patient-reported data helps doctors the most in Pompe care decisions.
Videos
Mark Tarnopolsky, MD, explains how Pompe disease doctors test whether a care plan is effective enough to continue.
Heather Shorten shares practical tips for addressing disappointing medical care.
Karen Kacures explains how she balances respect for both doctors' expertise and her own experience.
Haley Hayes shares what health benchmarks have felt underrated in her care.
Heather Shorten shares how to approach emotionally charged topics with doctors.
Dwayne Wilson shares his experience living with late-onset Pompe disease, explaining how he manages daily energy levels, adapts his mobility based on how his body feels, and relies on tools like hiking sticks and a wheelchair to stay safe and comfortable, while emphasizing…
Kate Manger reflects on the unexpected moments, milestones, and lessons that have shaped her daughter’s journey with Pompe disease, from early treatment to growing curiosity and perseverance.
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