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Blindness and other eye issues, as well as a propensity to burn in sunlight, are the physical challenges, but people with albinism also face the psychological challenges of looking different.
Those who have the condition don’t produce normal amounts of melanin pigment. The most common is oculocutaneous albinism, or OCA, affecting the eyes, hair and skin colour.
“Dealing with albinism was really hard, but I wasn’t the only one bullied, and all teenagers are anxious about how they look. I embraced the fact that I am who I am, but if you don’t like me, you can push off.” Knowlton Johnson and her family are unwaveringly positive about her condition.
“We got all the practical help we could, but wanted her to stand on her own feet,” says her father.
This is particularly true in Hollywood,” says Robin Spinks, the president of the fellowship, who frequently fields requests from modelling agencies and production companies, the vast majority of which are turned down.
“It’s not useful, as it perpetuates this idea there’s something 'freakish’ about the condition.