Sometimes, as a child, Ikponwosa Ero would scare herself looking in the mirror. “I would forget that I had white skin,” she says. “After playing a while with everyone around me, and then eventually I’d just catch my image in the mirror … ‘Oh my God, yeah, I do have white skin.’ ”

Ikponwosa Ero talks about the discrimination faced by people living with albinism in many sub-Saharan African countries. Video created by Bill Snaddon and published by the International Bar Association

Born in Nigeria to two black parents, Ero’s birth created a visible ripple in her family.

“When my mum had me she was really surprised, and she was hoping I would get darker,” Ero says, her shock of blonde curls casually tied in a pony tail. “Because most children who are born to black parents are born quite fair, and then over time they darken.

“So, [mum] thought, ‘Oh well, she’ll darken just like the rest of the children.’ But I didn’t. And it became very clear that I had albinism.”

Now 36 and a lawyer, Ero is the United Nations’  first independent expert on albinism, having been appointed by the Human Rights Council in 2015 as a way to focus attention on the issue. She has been working tirelessly on promoting and protecting the human rights for people with albinism for over a decade.

Read the full story in Bhekisisa, the Mail & Guardian’s centre for health journalism

Top photo: Ikponwosa Ero in London. Bill Snaddon