Unstuck: What to do when Pompe care falls short

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.

Watch Video

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

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.

Watch Video

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.

Watch Video

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.

Watch Video

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.

Watch Video

Calling in backup when Pompe care falls short

Heather Shorten shares practical tips for addressing disappointing medical care.

Watch Video

Balancing expertise with lived experience in Pompe care

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

Watch Video

Looking for success beyond lab results in Pompe care

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

Watch Video

Navigating difficult conversations with your Pompe doctors

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

Watch Video