Unstuck: What to do when Pompe care falls short

Episodes

Calling in backup when Pompe care falls short

Heather Shorten shares practical tips for addressing disappointing medical care.

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Balancing expertise with lived experience in Pompe care

Karen Kacures explains how she balances respect for both doctors' expertise and her own experience.

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Looking for success beyond lab results in Pompe care

Haley Hayes shares what health benchmarks have felt underrated in her care.

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Navigating difficult conversations with your Pompe doctors

Heather Shorten shares how to approach emotionally charged topics with doctors.

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