It's a Rare Story
It's a Rare Story
Podcast Description
It's a Rare Story is a podcast dedicated to amplifying the voices of those living with rare diseases and disabilities. Hosted by Sarah, who underwent a life-changing bone marrow transplant for an ultra-rare Glycoprotein Storage Disease, Alpha-Mannosidosis. This channel features powerful stories of resilience, hope, and determination. Hear how individuals navigate their unique journeys and learn that a diagnosis doesn't define their future. We believe in the strength of shared experiences and the power of living life to the fullest, no matter what. Subscribe to join our community!
Podcast Insights
Content Themes
The podcast focuses on themes such as resilience, hope, and advocacy within the rare disease community. Episodes feature powerful narratives like Saida's story with Partial Trisomy 8q Duplication Syndrome and Sarah's own journey with Alpha-Mannosidosis, addressing both personal challenges and the broader implications of living with rare conditions.
It’s a Rare Story is a podcast dedicated to amplifying the voices of those living with rare diseases and disabilities. Hosted by Sarah, who underwent a life-changing bone marrow transplant for an ultra-rare Glycoprotein Storage Disease, Alpha-Mannosidosis. This channel features powerful stories of resilience, hope, and determination. Hear how individuals navigate their unique journeys and learn that a diagnosis doesn’t define their future. We believe in the strength of shared experiences and the power of living life to the fullest, no matter what. Subscribe to join our community!
On this week’s episode, Sarah sat down with Jireh. Within the past few years, he was diagnosed with Fabry Disease aa rare genetic lysosomal storage disorder, where you don't have enough of a certain enzyme that breaks down fats. These fats collect in blood vessels and tissues, raising the risk of heart attack, stroke and kidney failure.Meet Jireh!I’m living with a rare genetic condition called Fabry disease. Three years ago, my life changed completely when I survived a subarachnoid hemorrhage and a right pontine stroke. These 2 strokes lead to my Fabry Disease diagnosis and a long road of recovery—physically, emotionally, and spiritually.I share my journey of living with a rare disease, managing the complexities of recovery, and how my faith has been the foundation of my strength. From navigating symptoms to finding purpose in the pain, my hope is that my story encourages others facing impossible odds. If you're facing trials—I pray this conversation brings you hope.Be joyful in hope. Patient in affliction. And faithful in prayer.Romans 8:28For all the ways to connect with him:Instagram: www.instagram.com/jireh.recapsYouTube: @jireh.recaps
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