Albinism Life podcast

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.

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!

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!

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.

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!

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!

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!

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”

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.

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.

Erin is 17 and her 15 year old sister Hattie has albinism. Erin chats openly about how school has been for Harriet and how Erin has felt really bad for her because of this. Erin chats about how she helps her sister and how she would do anything for her out of love.

Fin is the most talented artist. She is severely sight impaired and describes the way she perceives the world through her art. Fin is so easy to chat to and we moaned about photophobia and making eye contact - why bother!!!’

Albinism Life is a podcast series which focuses on all aspects of life within the community. We celebrate the highs, acknowledge the lows and chat about everything in between.