FabryCast

Learn about Jerry Walter's extraordinary journey living with Fabry disease, including his experiences with cardiac complications, a heart transplant, and his inspiring perspective on resilience and living a full life. This episode offers valuable insights into managing Fabry disease and the power of a positive mindset.

In this episode, we're joined by Dr. Michael West, a leading nephrologist, to explore the impact of Fabry disease on kidney health. We discuss the early signs of kidney involvement, the importance of regular monitoring, and the latest advancements in treatment options. Dr. West shares his expertise on managing kidney function and offers hope for future therapies. Discover how proactive steps can protect kidney health and enhance the quality of life for individuals affected by Fabry disease.

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 supportLinda opens up about her personal Fabry journey and shares professional insights on how intentional living and awareness can transform our relationship with chronic illness. This isn't just about surviving - it's about thriving.Perfect for: Anyone navigating health challenges, caregivers, or those interested in the mind-body connection and trauma healing.

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 the potential for future advancements in care, advocating for patient empowerment and lifestyle changes to improve health outcomes.

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 challenges of tough decisions, and the vital role caregivers play. 

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 awareness and support in the decision-making process. The discussion also highlights the challenges of navigating clinical trials and the significance of shared decision-making in fostering empowerment and confidence.

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 methodologies used in biomarker analysis and the implications for patient care, emphasizing the need for compliance and proactive communication between patients and their healthcare teams.

Dr. Robert Hopkin joins us for an in-depth discussion about the relationship between Fabry & sleep.

On this episode of the FabryCast it is our pleasure to welcome Dr. Gavin Oudit, a distinguished professor, staff cardiologist, & clinician scientist at the University Of Alberta. With his expertise in heart failure, cardiomyopathies, and the impact of COVID-19 on the cardiovascular system, Dr. Oudit’s insights promise to shed light on the intricate relationship between Fabry disease, and cardiac health.

Caregiver, On-call Chaplain, & Counsellor, we are honored to be joined by Sam Wu for this episode of the FabryCast. Sam believes that no one should walk alone, especially when they are feeling sick, & offers up some profound positivity for patients & caregivers alike! This is a must listen for anyone struggling in life, as Sam provides hope for those who need it most. Be rare, be you!

On this episode we are joined by another hero in the community, National Program Manager at the Canadian Fabry Disease Initiative, Kaye LeMoine. With an immense amount of compassion & knowledge, Kaye takes us behind the lab coat so that patients can better understand Fabry testing & why it is so important to get your tests done. We hope this encourages others to take their power back in a positive way. Be rare, be you!

On this episode of the FabryCast: Vancouver based Naturopath & CFA Board Member, the always amazing Dr. Seema Kanwal, guides listeners towards optimal health via perspective, encouragement, & advice on living with Fabry.

On this episode of the FabryCast we answer questions that have come in from the patient community. Dr. Aneal Khan thoughtfully gives insight to the questions listed below:Is Fabry an inflammatory disease? What comes first; left ventricular hypertrophy (LVH) or cardiac fibrosis? Patients have reported they experience pain when flying on an airplane - why do you think this could act as a trigger for pain? Is gabapentin okay to be on long-term? Are Fabry patients more at risk...

What is Fabry Disease and how is it passed on in families? Learn about the symptoms patients experience, what parts of the body are affected, and when symptoms usually begin.Have you heard people describe Fabry as “classic, or non-classic?” What does that mean and how do you know what type you have? Learn the foundations of Fabry and why females have such variability on this episode of the FabryCast.