It feels good to see people look up to me, says world's oldest Harlequin survivor Nusrit Shaheen

Nusrit Shaheen is a sports coach who works at a gym in Coventry, UK. Her life is very much like anyone else’s. She goes to work, hangs out with her friends and spends time with her family. But there isn’t anyone around her who resembles Nusrit in appearance. The 32-year-old is the world’s oldest survivor of Harlequin ichthyosis, a very rare genetic disorder.

What's that all about? The survivors of this condition have an armour-like coating on their body, which is separated by cracks, which would make them prone to bacterial infections. Most of the harlequin babies do not survive till adulthood and that's one of the reasons why Nusrit considers herself very lucky.

Adults must especially be educated. It is normal for kids to stare at someone who doesn't quite look the same as everyone else, not adults. If they have questions, they can always ask and understand

Nusrit Shaheen, World's oldest survivor of Harlequin icthyosis

It was her day off when she agreed to talk to us. Speaking with a heavy accent in a feeble voice, Nusrit said that she do not like the word disease and prefers to call Harlequin ichthyosis a condition.  Nusrit says she is happy to be the world’s oldest harlequin survivor. “It feels good to see people look up to me and say that there is someone doing things that I can’t probably do. I feel proud that way,” she says.

Born in the UK to Pakistani parents, she has three brothers and three sisters. She says that growing up wasn’t really bad because she had her family and good friends for support. “Kids would obviously stare and say things because I looked different. Adults as well. This happened when I first went to school,” she says. “But once they got to know me, they were fine,” she adds. 

The first harlequin baby in India was born earlier last month in Nagpur. She died two days later. The photograph of the baby with the doctor went viral. Nusrit did not really like that. “I am not very keen on the idea of circulating the baby’s photo. It’s not very fair to her family,” she says.

The first harlequin baby in India was born earlier last month in Nagpur. She died two days later. The photograph of the baby with the doctor went viral. Nusrit did not really like that. “I am not very keen on the idea of circulating the baby’s photo. It’s not very fair to her family,” she says

At the same time, she feels that people aren’t aware of her condition. “Adults must especially be educated. It is normal for kids to stare, not adults,” she states. “If they have questions, they can ask. I do try and educate people. A few days ago, I was with my friend and a few people came up to me and asked about my condition. I was happy to explain,” she says.

Bold and inspirational: Nusrit dressed in a salwar kameez at her Coventry home

She also wants the other survivors of this condition to go out and enjoy life. “Socialize and discover new things yourself. You cannot help people’s stares since you’re different,” she vociferates.Nusrit always had a liking for sports. Before joining the gym as a sports coach, she was the gym manager at her old college and a housekeeper at Travelodge. The condition is not affecting her job, she says. “I’ve been all right and quite healthy. But I do take my cream along and apply it at regular intervals,” she says.