The day she was born, doctors warned she might not live for more than a few hours.
Nusrit Shaheen, affectionately known as Nelly, was encased from head to toe in thick layers of skin that made her look like an ‘alien’ and threatened to suffocate her breathing. But her parents, who had already lost three other children to the same condition, urged hospital staff to fight for their newborn daughter.
Now, 33 years later, Nelly has become the world’s oldest survivor of the life-threatening disorder, Harlequin Ichthyosis, which causes skin to grow at 10 times the normal rate. There are just 25 sufferers in
Staying alive requires a punishing schedule of doctors’ appointments and four-hour daily scrubs, but Nelly has not let that hold her back. At every step she has defied expectations and now has a full life as a sports coach in Coventry, Warwickshire.
‘The way I think of life has helped because I know if you are not thinking positively, it can bring you down,’ she said. ‘It is nice to do what everyone else does, to work, earn money, and be independent.’
Nelly shares her inspiring story in Nelly: The ‘Snakeskin’ Woman, which airs on Channel 5 tomorrow night.
Speaking to MailOnline, she said she wanted to connect with people living with similar conditions.’I thought “Why not?” I wanted to show [them] what you can do.’
Harlequin Ichthyosis causes skin to become tight with thick, hard plates resembling armour plating or the harlequin suit of a jester, giving the disorder its name.
Sufferers’ faces might look stretched with turned out lips and eyelids, and the ears, hands and feet might be hidden under layers of skin.
The appearance of the skin has led Nelly to be dubbed the ‘snakeskin woman’ in the media, but she wants to distance herself from the ‘insensitive’ label.
‘Just because my skin sheds like a snake doesn’t mean I am a snake,’ she said.
Every day is a battle to stay healthy. Mornings start with a one-hour soak in the bath before a specialist carer arrives to help scrub away the dead skin for another hour.
Without this, Nelly would be susceptible to life-threatening infections. Her skin is then slathered in an intensive moisturiser, which is reapplied throughout the day.
The entire process is repeated again before bed. Even Nelly, whose positive outlook is almost unwavering, admits this draining routine can be difficult.
‘It is not easy to live with my condition but it is best to stay positive rather than look at the negative side of things,’ she said. ‘I like to do things, go out and enjoy my life.’
This includes her job as a sports coach at a local primary school, a future that seemed impossible when doctors gave her a 20 per cent chance of survival at birth.
‘It was not a pretty sight because it looked like an alien baby,’ Nelly said. ‘I lost three siblings from the same condition. I don’t think they had the same help when they were born. The reason I am here today is because of my parents.’
Working seemed out of the question because she never thought she would live long enough. Now she is able to educate pupils on the condition while keeping active, which has the added benefit of keeping her joints from seizing up.In her spare time she also volunteers at a cycling class for disabled children.
‘My first day was nerve-wracking because I knew the kids were going to be wary,’ Nelly said. ‘There were one or two kids who were scared but once they overcame that they were okay.’