'Albinism means you are never invisible'

Growing up in Coventry, Naseem Akhtar and her family faced judgement because of the way they looked.

Although they come from Pakistani heritage, albinism runs in the family - both of her parents, all six of their children, herself, and various other relatives have the genetic condition.

Albinism affects the production of melanin, which can affect eyesight as well as they way people with the condition look. This means the family have very pale skin and white hair - something which Akhtar said they faced mistreatment for.

"I used to hate bonfire night because you knew that the fireworks were going to come through the letterbox," she told the BBC.

Growing up in the city in the 80s, Akhtar found it difficult.

"When I came along, the stigma was a lot more prominent... it would have been more prominent for my father and my mother and my uncle and aunt who had the condition, because they were born in Pakistan... they came to Coventry at about 11 and 12.

"You're never invisible... you will stand out in any community and that takes a lot of strength and courage to fit in to that and to grow into yourself."

"I think that the traumas that we suffer as a child not fitting into your skin, into your identity, I think that then can play out later in life," she said.

"You have to kind of deal with those feelings... your nervous system got programmed by feeling that feeling of threat because when you were walking around as a child and you were experiencing bullying because you look different."

Despite this, Akhtar wanted to raise awareness of the condition from a young age.

"I was about 11 years old, I went onto the local radio to talk about albinism... I did that because I wanted to change that perception that people had - that we weren't the family that could just be dumped on or to be bullied."

Akhtar is 14 years older than one of her siblings, Mohammed Rafi, now 32, and said the treatment he received growing up was a lot more accepting.

"We stayed in the same same area in Coventry, so our neighbours, community... they know us that way and there was more awareness over the years," said Rafi.

Akhtar added: "And that shows progression, that Rafi's experience is completely different to mine, which I think can only mean that we as a society are more accepting of difference, and we are more integrated a little bit."

"The main thing that we struggle with is the vision," added Rafi, who has poor eyesight.

The reduced amount of melanin in albinism can cause eye problems, including poor eyesight, astigmatism, or photophobia, according to the NHS.

In 2022, they received a Guinness World Record for the most siblings with albinism.

Akhtar described this as a "mark that that it's OK to be different and and it's all right".

None of their children have albinism, but do carry the gene.

The siblings said they were not sad that the condition could end in the family in their children's generation.

"Although we carry this uniqueness, we also know the struggle of how it has been to find our way in life and to live life in this unique way," said Akhtar.

"Our children will not struggle with the difficulties of having a disability and a long-term condition, I think that's the blessing.

"Although we have learned to grow into ourselves... it's hard work trying to grow into your skin."

Akhtar added that in talking about the condition, she hoped she could help the next generations of those with albinism.

"We're able to advocate for that, we're able to like have a voice for that and to change that because a lot of it is your perception, the more you change your perception about how you feel about yourself you will have a better life.

"I was inspired as a child, my specialist teacher that came to support me when I was younger, he had albinism.

"He inspired me, so if I as a person can give something back to this world - to inspire others - then I feel like I've done my bit on this earth."

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