FabryCast
The FabryCast brings the human element of living with a rare disease. It’s a podcast for important conversations that teaches small bits of information, practical insights, and things you can do today to positively impact your life with Fabry. Hear from experts in the field, have the opportunity to “Ask a Doctor Anything” and keep up to date with what's happening in the Fabry space.
Episodes
In this episode, we are joined by Linda Quaranta - a licensed EMDR therapist who also happens to be living with Fabry disease herself.
What you'll discover:
*How to find purpose while managing chronic illness
*The powerful connection between trauma and physical health
*How EMDR therapy can be a game-changer for healing emotional wounds
*Real strategies for building resilience and community support
Linda opens up about...
In this conversation, Dr. John Jeffries discusses the complexities of Fabry disease and the importance of a strong patient-physician partnership in managing cardiac care. He emphasizes the role of wearables and AI in monitoring patient health, the significance of early warning signs, and the need for effective communication between patients and providers. Dr. Jeffries also addresses common myths about Fabry disease and highlights t...
How does Fabry disease impact mental health? What role do anxiety, pain management, and emotional well-being play in the patient journey? Julia Alton and Christine Leighland explore these questions, discussing coping strategies like mindfulness and cognitive behavioral therapy. How can acceptance and self-compassion make a difference? Why is psychotherapy so important? They also dive into the Be Rare, Be You campaign, the challenge...
Julia Alton and Jennifer Siedman delve into the complexities of decision-making, particularly in the context of chronic illness and rare diseases. They explore the concept of decision fatigue, the emotional toll it takes on caregivers and patients, and the importance of understanding one's decision-making style. Jennifer shares insights from her personal experiences and professional expertise, emphasizing the need for emotional...
This conversation delves into the complexities of Fabry disease, a rare lysosomal storage disorder, and the critical role of biomarkers, particularly Lysogb3, in diagnosis and treatment monitoring. The discussion highlights the importance of awareness among healthcare providers, the significance of early detection, and the advancements in research aimed at improving patient outcomes. Christiane Oribelle shares her insights on the m...
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