Nelly is a real diamond girl
Nusrit Shaheen will be stepping out in Sutton Park to raise awareness of a rare skin condition. Alison Jones met the college student who is the oldest survivor with harlequin icthyosis in the UK.
Every morning Nusrit Shaheen, known as Nelly to her friends, enjoys a long soak in the bath. She will also usually have one before she goes to bed at night.
Nothing unusual. Many people chose to relax in this way. But for Nelly her daily routine is not done to help her unwind, it is a medical necessity.
The baths are just two steps in a rigorous regime of sloughing off skin and being covered in liquid paraffin that she has to endure in order to cope with the rare skin condition harlequin icthyosis.
It is so rare that at just 24, Nelly is the oldest survivor with the life-threatening disease in the UK. Most sufferers die when they are babies.
It means that her skin grows 10 times faster than normal and has to be rubbed off.
The names comes from the diamond-shaped scales that are characteristics of infants born with it. Like human armour plating, its stiffness can restrict respiration while the cracks in it mean that sufferers are also very susceptible to infections.
"I did get a bad one when I was younger and I still get them from time to time but not as many as I used to," Nelly explains. "I try and prevent them as much as possible by keeping myself fit."
Nelly is determined not to be metaphorically wrapped in cotton wool because of her illness and admits that sometimes she is as bad as any other 20 something about looking after her health.
"I don't have a special diet but I probably should eat more fruit and vegetables and fewer kebabs," she says, grinning cheekily. "Maybe take some vitamins and stuff,"
Nelly has four sibling who were also born with the same condition and who died as small children. She has two other brothers and two sisters who escaped the mutated gene that causes it.
"It was hard on my parents," she admits, her characteristic bubbliness suddenly dimming for a moment.
As she grew up she was determined to be like any other youngster and join in with sibling rough and tumble.
"I did have to be careful and if I did get a few knocks they had to be bandaged to make sure they didn't get infected."
She was self-conscious about her appearance though and used to hide beneath baggy clothes and a coat. Now though she favours pretty tops, sparkly T-shirts and electric blue nail varnish.
She has also got accustomed to the stares of strangers, particularly outside the non-judg-mental walls of Hereward College in Coventry where she is a student.
"People do make comments," she says. "It is harder out of college. I don't let them to get the better of me, unless they actually come up and ask me questions which I don't mind answering."
Three years ago a television production company made a documentary about two pairs of sisters, Lucy and Hannah Betts and Dana and Lara Bowen, who all have