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Nusrit Shaheen, 30, suffers from Harlequin Ichthyosis, an extremely rare genetic disorder which affects around five babies a year in the UK. She is pictured with her nephew Hassan

Covered in “fish scales”, Nusrit Shaheen lives each day in agonising pain, the oldest survivor of a rare skin disease.

For the 30-year-old, each day is a battle. But she refuses to let her condition get in the way of living her life, playing sport and studying – determined to be a role model for children affected.

She suffers from Harlequin Ichthyosis – an extremely rare genetic disorder which causes the skin to grow seven times faster than normal.

The skin appears tight, with thick plates of hard scales resembling armour plating or the harlequin suit of a jester. The skin splits at several areas causing deep cracks. And a sufferer’s face looks stretched with turned out lips and eyelids, and the ears, hands and feet may be hidden by scales.

Four of Shaheen’s siblings died from the disease at birth. And at 30 years old, she is thought to be Britain’s oldest survivor.

Last year she was hospitalised with a bacterial infection and prescribed antibiotics, which caused all her toenails to fall off. And with the return of the cold weather, Shaheen faces being confined to a wheelchair, as her skin stiffens up and cracks, restricting her ability to move.

“I’ve been in good health recently,” she said. “It has its ups and downs. The cold weather really affects the condition so I’m braced for winter.

“My skin stiffens up when it’s freezing so it can be really painful and tough to move.”

Shaheen, from Coventry, said she hopes she can be an example and inspiration to others who live in pain every day.

Babies born with Harlequin Icthyosis have diamond-shaped scales that can cause problems with the respiratory system and restrict their movement.

The cracks that appear in the skin can lead to dangerous infections, leaving sufferers bed-bound or hospitalised for weeks at a time.

The condition, caused by a mutated gene carried by her parents, makes skin grow seven times faster than normal.

The extra skin needs to be removed constantly and ointment is also applied four or five times-a-day.

Shaheen uses the moisturiser Hydromol and goes through three tubs of the over-the-counter cream every week.

She said: “It’s strange. It’s exciting to be the oldest person to survive with this condition but at the same time a little bit scary.” – Yahoo