Albinism Life podcast

Albinism Fellowship UK Kristina
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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.

  1. Sep 27

    Albinism Life growing up in Nigeria as a black person with albinism

    Teejay was born in Lagos, Nigeria, before moving to the UK to study. In this episode, he talks openly about growing up with albinism in Nigeria, adapting to life in the UK, and his determination to make the world a better place — no small ambition! A warm and thoughtful conversation about albinism, belonging, big dreams and believing that one person really can make a difference.

  2. Sep 27

    Albinism Life - Travelling with albinism and a visual impairment

    In this episode of Albinism Life, we talk to Emma about travel as a young person with albinism and low vision. Emma talks openly about some of the challenges she has faced — not just the practical difficulties of travelling with low vision, but the social side too. When do you tell someone you have albinism? How do you explain what you can and can’t see? And how do you deal with the different ways people react? But this is also a conversation about the joy of travel, independence and discovering what you’re capable of. Emma talks about growing in confidence, learning to set her own boundaries and finding her voice. A thoughtful and honest conversation about albinism, travel, confidence and becoming more comfortable in your own skin.

  3. Sep 27

    Albinism Life - Naseem building a life as an Asian person with albinism in the UK

    In this episode, we hear Naseem’s extraordinary story. Born into the world’s largest family of people with albinism, Naseem talks openly about growing up with albinism, her family and the cultural challenges she faced. At just 18, she made the incredibly difficult decision to leave home to protect herself and start again. Today, Naseem is happily married with three children of her own. This is a gentle but powerful conversation about family, identity, resilience, sacrifice and what it means to start over and build a life for yourself.

  4. Sep 27

    Emma - albinism and travel as a young person

    Join Emma as she shares her story of travel as a young person with albinism and low vision. In this warm and honest conversation, she talks about navigating social situations, deciding when and how to talk about her albinism. Handling other people’s reactions and the very real challenges that come with stepping out of your comfort zone. She also reflects on the flip side, the joy, independence and confidence that travel has given her. It’s an uplifting, relatable chat about growth, boundaries and finding your voice.

  5. Sep 27

    Naseem - albinism in an Asian culture in UK

    In this episode, we hear Naseem’s extraordinary story. Born into the world’s largest family of people with albinism, as recognised by Guinness World Records, she shares what it was like growing up in a culture that didn’t always understand her. Naseem reflects on her early struggles, her relationship with her family, and the very real fears she faced as a young woman. Including the moment she left home at 18 to protect herself and start again. Today, she’s built a loving life and is happily married with 3 children. This is a gentle yet powerful conversation about resilience, sacrifice, and starting over, and the quiet strength it takes to choose your own path.

  6. Sep 27

    Teejay - Albinism in UK as a black person

    Teejay was born in Lagos, Nigeria, before moving to the UK to study. In this episode, he talks openly about growing up with albinism in Nigeria, adapting to life in the UK, and his determination to make the world a better place — no small ambition! A warm and thoughtful conversation about albinism, belonging, big dreams and believing that one person really can make a difference.

  7. 01/17/2025

    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.

  8. 01/17/2025

    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 around the world. Find out about what happens we he goes to the opera!

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About

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.

Information

  • Creator
    Albinism Fellowship UK Kristina
  • Years Active
    2025 - 2026
  • Episodes
    19
  • Rating
    Clean
  • Copyright
    © Copyright 2024 All rights reserved.
  • Show Website
    Albinism Life podcast