Hindsight's 20/20: Insights from tough lessons learned with HAE

Preparing for difficulties in HAE treatment access

Hollie Amadio shares questions that help with predicting how difficult treatment access will be.

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About the series

We listened to the conversations happening across the hereditary angioedema 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.

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A caregiver’s role in navigating HAE appointments

Daryl Sirota shares how he supports medical visits by listening, taking notes, and helping navigate care.

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How to take control of HAE appointments and treatment decisions

Leah Sirota shares how she prepares for appointments and makes confident treatment decisions.

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Preparing for difficulties in HAE treatment access

Hollie Amadio shares questions that help with predicting how difficult treatment access will be.

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Recalibrating the speed of life with HAE

Caregiver Daryl Sirota reflects on what he needed to change about his lifestyle once his family members were diagnosed.

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Regrets from the early HAE days

Hollie Amadio shares why speaking up sooner and asking persistent questions could have led to earlier treatment.

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The only certain thing in HAE’s uncertainty

Leah Sirota reflects on the only certainty she has found amid HAE's chaos.

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Learning to listen differently during HAE flares

Caregiver Daryl Sirota reflects on changes he's made to better support his loved ones.

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