Unstuck: What to do when Pompe care falls short

Looking beyond muscle strength in Pompe monitoring

Mark Tarnopolsky, MD, discusses why functional measures, such as standing from a chair and climbing stairs, may provide a more…

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About the series

We listened to the conversations happening across the Pompe disease community to uncover the questions and challenges that matter most. In this video series, community members share their personal journeys, hard-won wisdom, and advice for navigating life with this condition. These are voices of experience from real people who truly understand.

Episodes

Moving quickly, but thoughtfully, with Pompe treatment decisions

Haley Hayes discusses the importance of balancing urgency with careful decision-making when considering treatment options.

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Helping Pompe disease doctors organize cross-team collaboration

Karen Kacures shares why bringing important documents to appointments can help improve coordination among your healthcare providers.

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Looking beyond muscle strength in Pompe monitoring

Mark Tarnopolsky, MD, discusses why functional measures, such as standing from a chair and climbing stairs, may provide a more…

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How caregivers can change the course of Pompe disease

Mark Tarnopolsky, MD, discusses how caregivers and support systems can shape daily life for people living with Pompe disease.

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Roping in support staff when encountering Pompe care obstacles

Heather Shorten shares why speaking up in healthcare can feel difficult and how support staff can help patients feel heard and understood.

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How the patient helps the doctor with Pompe care

Mark Tarnopolsky, MD, discusses what patient-reported data helps doctors the most in Pompe care decisions.

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How doctors test whether a Pompe care plan is working out

Mark Tarnopolsky, MD, explains how Pompe disease doctors test whether a care plan is effective enough to continue.

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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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