Albinism Life podcast

Albinism Life podcast

Welcome to Albinism Life! Brought to you by the Albinism Fellowship, this podcast dives into all things albinism-related. Hosted by Kristina Venning Rose, co-chair of the charity, we’re here to celebrate the highs, acknowledge the challenges, and share incredible stories from our community. Join us as we explore personal journeys, hear from medics about the latest in research, vision, and genetics, and give a voice to everyone in our amazing community. If you’d like to get involved or share your story, we’d love to hear from you! Drop us an email at info@albinism.org.uk.

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Episoder(13)

Albinism 101 -  The basics of albinism

Albinism 101 - The basics of albinism

Kristina Venning Rose sits down with Dr Jay Self, Paediatric ophthalmologist, and leading Albinism expert from Southampton UK. He explains the basics of albinism in an easy-to-understand way.

17 Jan 202519min

Albinism Life “Blending  in at the opera”.

Albinism Life “Blending in at the opera”.

Luke has albinism and chats to Kristina Venning Rose about his experiences growing up, looking different, accepting himself and having an amazing career designing cruise ships which takes him all a...

17 Jan 202536min

Albinism Life - “I have been mistaken for  colonel Sanders”

Albinism Life - “I have been mistaken for colonel Sanders”

Ben is a student doing a degree to become a professional musician - he is a drummer. Ben talks about the challenges of living independently, his dislike for crossing roads and sunlight! We chat about ...

17 Jan 202537min

Albinism Life - When you find out your baby has albinism.

Albinism Life - When you find out your baby has albinism.

Jon & Debbie talk about their journey, finding out their daughter, Cleo had albinism. We discuss the early days and months after Cleo’s diagnosis, having more children, modelling and equipping their d...

17 Jan 202555min

Albinism life - “I know when you are chewing gum”

Albinism life - “I know when you are chewing gum”

Adam is a deputy head teacher at a large secondary school in the UK. He is also a Paralympian, dad and an all round amazing positive person. We chat about the goalball, the challenges of teaching wit...

17 Jan 202527min

Albinism Life - Albinism research with Dr Helena Lee

Albinism Life - Albinism research with Dr Helena Lee

Helens Lee is a children’s eye doctor and clinician scientist who is currently researching the potential of improving retinal development and therefore vision in infants and young children in the fi...

17 Jan 202527min

Albinism Life “I had a frozen orange thrown at my head”

Albinism Life “I had a frozen orange thrown at my head”

Jenny bovard lives in Canada. We chat about growing up with albinism, the journey of self acceptance, hiding our visual impairment and lots more. Jenny is a such fun to chat to and a great story telle...

17 Jan 202550min

Albinism Life “I just wanted to see someone like me”

Albinism Life “I just wanted to see someone like me”

Sara chats about what role models mean to her and how they don’t have to be Paralympic gold medalists, just people she can relate to. Sara and Kristina are best friends and met at an albinism conferen...

17 Jan 202534min

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