Fabry Disease: Patients' Real-World Problems and How to Manage Them

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Fabry Disease: Patients' Real-World Problems and How to Manage Them

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Living with Fabry disease can involve much more than managing the underlying disease. Patients may experience chronic pain, fatigue, headaches, cognitive concerns, hearing difficulties, and complications involving the heart and kidneys. Coordinating care among multiple specialists can add another layer of complexity.

In this episode, Staci Kallish, DO, Associate Professor of Clinical Medicine at the Perelman School of Medicine at the University of Pennsylvania, and Dawn Laney, MS, CGC, CCRC, Genetic Counselor and Program Leader of the Lysosomal Storage Disease Center at Emory University School of Medicine, discuss the real-world challenges faced by people living with Fabry disease.

The conversation features candid patient perspectives on four key areas of Fabry care:

Managing symptoms: Why neuropathic pain, abdominal pain, headaches, fatigue, and other persistent symptoms may require approaches beyond Fabry-specific therapy.
Managing cardiac and stroke risk: Why routine tests may not always provide the full picture and how experienced Fabry specialists can work with local cardiologists and other providers.
Protecting kidney health: The importance of distinguishing Fabry-related kidney disease from other kidney problems and ensuring that nephrologists understand the unique risks associated with Fabry disease.
Coordinating a multidisciplinary care team: How a “quarterback” or medical home can help connect geneticists, cardiologists, nephrologists, primary care physicians, and other specialists.

Drs. Kallish and Laney also discuss the importance of recognizing invisible symptoms, understanding individual pain triggers, using recommended schedules of assessments, accessing therapies closer to home, and taking advantage of patient advocacy and financial assistance resources.

For patients and families living with Fabry disease, the message is clear: effective care requires more than treating the disease—it requires understanding the person living with it.

This educational program is a non-CME activity made possible by an unrestricted grant from Amicus Therapeutics.

Produced by CheckRare.

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