NHS Doctor, broadcaster and Jeans for Genes Ambassador, Dr Oscar Duke was born with the genetic condition Albinism, a congenital disorder characterized by the complete or partial absence of the melanin pigment in the skin, hair and eyes and is associated with a number of vision defects, sunburn and skin cancer.
Today on International Albinism Awareness Day , Dr Oscar Duke shares his personal story and those of others who face discrimination and persecution for living with albinism and shares his dream of a world filled with support and understanding.
When I first popped into the world, my parents noticed I was very fair. Some might even say white, super white. Within a few weeks I’d been diagnosed with a condition called albinism, or more correctly, Oculocutaneous Albinism. My parents were told that I wouldn’t be able to attend mainstream school or lead a normal life. Luckily, this was wrong.
Albinism is a genetic disorder which results in the lack of production of a pigment called melanin, the dye responsible for giving our skin and hair colour. As a result, people like me with albinism have incredibly pale skin and hair. Melanin also helps with the development of the retina, the processing part of the eye, and so people with albinism always have associated visual problems – some are registered blind or severely visually impaired.
In the UK approximately 1 in 20,000 people are born with albinism. Many face discrimination due to their difference in appearance or visual impairment. As a child I remember being spat or sworn at by strangers because I looked different. But in some parts of the world, the discrimination faced by those with albinism is far greater.
Last year, I made a documentary for BBC2 – ‘Born Too White’ – looking at the persecution of people with albinism in East Africa, where witch doctors spread the belief that their body parts can be used in potions to bring good luck and fortune. These firmly entrenched cultural beliefs result in the attack, mutilation and murder of many people with albinism every year. Children are particularly at risk of attack and in some countries are locked in protectorate centres for their own safety.
As a doctor with albinism, I hope that one day – in the not too distant future – gene therapy will be able to provide a potential cure for those affected by this condition. But in the meantime, I am delighted to be working with Jeans for Genes in raising awareness of this and many other genetic disorders.
It is only through increasing education and understanding that we can truly fight the discrimination faced by those living each day with genetic conditions outside of their control.
Dr Oscar Duke will next be on TV screens across the UK as part of the BBC’s celebration of the 70th anniversary of the NHS. ‘How the NHS Changed Our Word’ airs 7pm Wednesday 27th June on BBC2.
Sign up to Jeans for Genes Day this year and help us support children affected by genetic disorders like albinism. Jeans for Genes Day takes place on the 18th – 24th September 2023 www.jeansforgenesday.org