Naseem Akhtar and her siblings, all of whom have albinism, have shared their experiences growing up in Coventry, detailing the challenges of societal stigma and their journey toward self-acceptance.
Albinism is a genetic condition that affects melanin production, impacting skin and hair pigmentation, as well as eyesight. For Akhtar's family, with parents and all six children having the condition, this meant standing out in their community.
"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," Akhtar told the BBC. She recalled instances of mistreatment, including fireworks being thrown through their letterbox during bonfire nights.
Akhtar, who is 14 years older than her brother Mohammed Rafi, noted a significant difference in their childhood experiences. "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," she said.
Rafi, now 32, found that by the time he was growing up, awareness had increased, and their neighbors and community were more familiar with their family. "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," Rafi stated. Akhtar sees this as progress: "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."
Beyond the social challenges, albinism can lead to vision impairment. "The main thing that we struggle with is the vision," Rafi explained. According to the NHS, reduced melanin can cause various eye issues, including poor eyesight and photophobia.
In 2022, the siblings were recognized by Guinness World Records for having the most siblings with albinism. Akhtar described the award as a symbol that "it's OK to be different and and it's all right."
While none of their own children have albinism, they carry the gene. The siblings expressed no sadness about the condition potentially ending with their generation, viewing it as a blessing that their children will not face the same difficulties. "Although we have learned to grow into ourselves... it's hard work trying to grow into your skin," Akhtar reflected.
Akhtar hopes that by sharing their story, they can inspire others with 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," she said.