Living with albinism: ‘I’m the one-in-18,000 in the UK’

BBC News

2nd July 2017

Living with albinism: ‘I’m the one-in-18,000 in the UK’

By Ceri Coleman-Phillips

When Neil Jones was born in mid Wales 40 years ago, it was clear something was wrong. Doctors were baffled by problems with his eyes and it took them two years to come up with the final diagnosis of albinism. But what is albinism? And what did it mean for a young boy growing up in a small Powys town?

“When I was born no-one else in my family had the condition,” he said. “The doctors didn’t really have a clue what it was they were looking at.”

Albinism is a lifelong condition which limits the body’s ability to produce melanin – the pigment which gives hair, skin and eyes their colour.

About one in 18,000 people are affected in Wales, the equivalent of 175 people.

People with albinism can have pale skin which burns easily in the sun, white hair, short sight, a sensitivity to light and involuntary eye movements.

There are two types of albinism – that which affects the skin, hair and eyes (oculo-cutaneous albinism) and that which affects just the eyes (ocular-albinism).

Mr Jones, who lives with his partner in Llanidloes, who has the latter, said there was a lack of support for his parents who “were alone in the dark” in raising a child with albinism.

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