Member Article

Sports charity to raise awareness of Harlequin Ichthyosis

Britain’s oldest survivor of a rare skin condition has landed a new job with a Coventry sporting charity, where she hopes to raise awareness of her condition.

Coventry-born Nusrit Shaheen is one of an estimated 14 people in Britain who have been diagnosed with Harlequin Ichthyosis - a severe genetic skin disease that makes skin grow ten times faster than the normal rate.

The disorder, caused by a mutated gene carried by her parents, means that Nusrit’s skin cracks easily, leaving her exposed and susceptible to dangerous bacteria and infection that has caused her to be bed-bound or even hospitalised in the past.

Now aged 32, Nusrit, nicknamed Nelly, is the oldest known survivor of the condition in the UK and she is hoping to apply her positive and determined attitude in her new job as sports coach at Coventry Sports Foundation.

Nusrit, who previously worked at Hereward College, now works part-time for the sports and leisure provider, where she coaches sporting sessions at Centre AT7, in Bell Green Road.

As part of the job, Nusrit also visits primary schools, including Finham Primary in Green Lane, to assist with lunch times and after school clubs, where she helps lead disability sport sessions such as benchball.

“I’m absolutely loving the job so far, the Coventry Sports Foundation team are so friendly and supportive,” she said.

“Working with children is great because I’m able to raise awareness of Harlequin Ichthyosis, which teaches kids valuable life lessons such as to be accepting and kind towards others and also helps encourage children who have been diagnosed with rare conditions themselves to be more outgoing and get involved with sports.

“My condition can be tough but working with the Foundation allows me to be active which can only be a good thing for my health.

“I’ve always been really into sports and whilst it’s a great way of meeting people and socialising, keeping active also helps me remain confident, positive and ready to face any challenges that happen as a result of my condition.

“My next challenge will see me take on a skydive, which the team at work are shocked about but really supportive!”

Wendy Jackson, community development manager at Coventry Sports Foundation – which operates three leisure centres in the city – said: “Nelly has an infectious and enthusiastic spirit and approaches any obstacle with huge positivity, she’s a real inspiration.

“She’s proved herself to be a real asset to the team, schoolchildren have loved having her as part of sports activities at school and Centre AT7.

“The Foundation is thrilled to have employees with as much character and strength as Nelly, who makes using our facilities a pleasure for any visitors who walk through the door.

“As a sporting charity, Nelly embodies all of the values of the Foundation and we’re sure her attitude will have a great impact on the team, our visitors and all schools who work with us, as well as raise awareness of her condition.”

This was posted in Bdaily's Members' News section by Matt Joyce .