Student shines light on Albinism in powerful presentation

Student, Emma Thompson, delivered an informative and powerful presentation on the subject of Albinism to a packed audience on Thursday 18 April. Emma explored this topic for her Extended Project Qualification (EPQ) and undertook thorough independent research to inform her written work and final presentation.

Pictured: Emma standing in front of a large screen which displays the title slide of her presentation

Emma, who herself has Albinism, spoke openly and honestly about her experiences living with the condition. She incorporated personal anecdotes and family photos to illustrate her points, effectively conveying the impact Albinism has on individuals and their families.

Albinism is a genetic disorder affecting melanin production in the skin, hair, and eyes. It occurs in one in 20,000 people worldwide, and Emma's specific type is OCA1(a). She highlighted the varying presentations of Albinism, emphasising that no two cases are identical.

Emma's personal story resonated with the audience. She spoke about the challenges she faced growing up, including limited daytime activities due to sun sensitivity, which hindered her social interactions, her frustration with continual sunscreen application, and how she experienced bullying for her appearance.

Through her research, Emma unearthed disturbing realities concerning the treatment of Albinos in East Africa, where the prevalence is significantly higher (one in 14,000). Particularly in Tanzania, Uganda, and Malawi, Albinos are subjected to horrific violence, including beatings and killings. Their body parts are sought after for use in witchcraft rituals and for "lucky charms", leading to a disturbing trade. Sadly, Albinos are also victims of trafficking, kidnappings and organ removal. The cultural stigma surrounding Albinism is deeply ingrained, associating the condition with bad luck. Adding to the horror, Emma revealed another barbaric practice that when a dignitary dies within a community, they are buried alongside four living albinos.

Following her presentation, Emma fielded questions and left the audience with the message:

‘Listen to the individual. I never got the things I needed as I wasn't confident enough to ask. Keep reassuring and keep asking if there are things they need. It's always the person, not the condition.’

Emma's presentation effectively shone a light on the importance of inclusivity, understanding, and the continued fight against discrimination.