Rarely Heard: Hunter Syndrome
Takeda PharmaceuticalsRarely Heard is about Hunter syndrome, a rare and life-changing genetic condition and is intended for families, patients, and anyone interested in learning about the disease.This podcast is initiated and funded by Takeda Pharmaceuticals and is intended for an international audience outside the USA and UK. The information shared is for educational purposes and does not constitute clinical recommend... more
| Publishes | Daily | Episodes | 10 | Founded | 3 years ago |
|---|---|---|---|---|---|
| Categories | MedicineHealth & Fitness | ||||
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Latest Episodes
Hunter syndrome is a rare and life-changing disease. In this introductory episode, we provide a basic overview of Hunter syndrome, its cause and genetic inheritance. We also go over its common signs and symptoms, as well as the journey to a diagnosis... more
Hunter syndrome has a wide range of clinical manifestations and requires a complex treatment and management strategy. This episode details the multiorgan nature of the disease, potential management options, and how they can reduce the likelihood of c... more
Parents and caregivers have to deal with many challenges in their daily lives and complicated emotions that affect their well-being. This episode addresses the psychological aspects of caring for a child with a complex and chronic disease. We provide... more
The clinical symptoms of Hunter syndrome appear across a diverse spectrum. In this episode, we are joined by Dr Barbara Burton, a specialist in the disease. Dr Burton discusses how Hunter syndrome has impacted patients in her clinical practice and th... more
Managing Hunter syndrome is a complex and life-long process, with many specialists involved in caring for patients. In the second part of our interview with Dr Barbara Burton, we take a deeper look at the importance of a coordinated care approach in ... more
Living with Hunter syndrome is overwhelming, but there are many sources of support available. This episode features Bob Stevens (UK MPS Society) and Terri Klein (US National MPS Society), who are very familiar with the challenges that families face. ... more
The diagnosis of Hunter syndrome compels families to re-evaluate their priorities and rethink their future plans. Bob Stevens joins us again, but this time from a parent’s perspective, to share his family’s journey as his two adult sons navigate life... more
The neuronopathic form of Hunter syndrome can have a devastating effect on families. In this episode, we are joined by Avram Joseph, whose son Kalel is living with this severe form of the disease. Avram provides us with a heartwarming account of how ... more
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Apple Podcasts | #191 |  Singapore/Health & Fitness/Medicine |
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