Albinism Life podcast

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.

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!

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 falling off stage and the seasonal names we get called!

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 daughter with all the tools she will need to empower and enable her to advocate for herself.

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 with albinism and how Adam can tell when the kids are chewing gum!

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 first 18-24 months of life by taking levodopa. We chat about this and other research into albinism and why it’s not possible to just give someone a shot of pigment!

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 teller. Listen in to find out more about frozen oranges!

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 conference many years ago. We talk about our journey of friendship and how amazing it is to have someone who just “gets it”

Nystagmus & albinism 101

Dr Jay Self is a children’s eye doctor, clinician researcher and professor at the University of Southampton. Albinism and nystagmus usually go hand in hand (but not always) Jay explains the impact nystagmus has on the vision of a person with albinism, what makes nystagmus better or worse, how eye charts aren’t great at measuring vision in albinism and what treatment options are available.

Albinism Life “I am always remembered by people because I have albinism”

Jess is currently studying for her A-levels, she wants to become a lawyer. Jess talks about how hard it can be at school socially when you have albinism. Not fitting in with any group and how that can have an impact on mental health. Jess has a very strong sense of self and is an amazing young person.