20 episodes
Rarely Heard Beacon
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- Health & Fitness
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5.0 • 9 Ratings
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Rarely Heard is a rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with some of the world's rarest diseases as these should not be Rarely Heard, but widely shared.
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S2, E1. Poland Syndrome: Bodies and boobs from adolescence to advocacy
Rebecca Butcher was born with a rare condition called Poland Syndrome that caused one of her chest muscles to be deformed and therefore means that she only developed one breast.
We spoke about her experience with diagnosis and interacting with healthcare professionals; and how her belief that Poland Syndrome didn’t really effect women led her towards advocacy and connecting with a wider community of people like herself. -
Surgeons as supporters: ‘much more than just fixing a problem with a scalpel’
Andrea Jester is the clinical lead at the hand and upper limb service at Birmingham Women and Children’s Hospital. She is instrumental in the effective coordination of the Poland Syndrome Clinics at the hospital.
She speaks about her belief that being a surgeon is as much about support and coordination of care as it is about fixing problems and performing surgical procedures. -
Hard choices, pursuing motherhood and seeing the good side
Erin is a Canadian author and public speaker, who tested gene positive for Huntington’s Disease (HD) in 2006. Shortly after she started suffering from depression, then received the devastating news that she was infertile. Despite those diagnoses she was determined to have a family and live a joyful life.
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The role of the genetic counsellor: helping people to make the choices that are right for them
Clare Gibbons is a genetic counsellor at North York General Hospital in Toronto where she currently works as the manager of Clinical Genetics. Throughout her career, she has participated in the care of a wide variety of genetics patients and has been a member of the North York General Hospital Huntington Disease Multidisciplinary team for over 20 years.
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S2, E5. Alport Syndrome: When your life changes overnight, finding hope, taking action and giving support
Kevin experienced renal failure at age 26 that turned his life upside down overnight. He talks about the experience of diagnosis, subsequent dialysis for two years and receiving a living donor transplant from a close friend.
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S2, E6. Alport Syndrome: Developing with the community and being involved as a clinician
Dr Matt Hall is a consultant kidney physician in Nottingham with an interest in rare and inherited kidney diseases, pregnancy and kidney disease, and clinical trial delivery.
He talks about working with patients with rare kidney diseases, his passion for the rare community and how he thinks clinicians and patient groups can build and sustain relationships.
Customer Reviews
Brilliant podcast
Interesting stories of resilience. Rarely Heard presents people facing rare disease challenges. It’s so helpful to hear their first hand accounts and finding supportive communities along the way. Really important. Thank you!