‘Snakeskin woman’, 33, becomes the oldest ever with a rare condition that causes her skin to grow thick and scaly (and she wants you to know she’s just like anyone else)
By Stephanie Linning for MailOnline 14:08 BST 22 Mar 2017, updated 15:14 BST 22 Mar 2017
- Nusrit Shaheen was born with Harlequin Ichthyosis, a very rare skin condition
- Doctors did not expect her to live but she has just celebrated her 33rd birthday
- She has become a sports coach and works at sports clubs for disabled children
- Miss Shaheen reveals what it is like to live with the disorder in new documentary
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 the UK.
‘It makes you feel worthless in a way, because you look different,’ she said.
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.’
In fact it is adults that prove more difficult. ‘I still get the stares, or the muttering under their breaths,’ she said. ‘I’m a human being at the end of the day, just like you.’
Nelly is supported in her daily struggle with her skin by her family and friends. She lives with her brother, Ash, his wife and children at their Coventry home. In one touching moment, Ash describes his sister as an ‘inspiration’.
While she is an avowed tomboy, Nelly also enjoys indulging in beauty treatments and is seen having a manicure with two of her beloved nieces.
HARLEQUIN ICHTHYOSIS: AN EXTREMELY RARE DISEASE
Harlequin Ichthyosis is an extremely rare condition, affecting just one in every three million people in Britain.
It is a genetic condition. Parents who carry the gene will have a one in four risk of any baby being affected.
The condition causes the skin to grow up to ten 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 extra skin needs to be removed constantly and ointment is also applied four or five times-a-day.
Children who survive will need ongoing intensive skin treatment with creams and courses of retinoid medicine and many require physiotherapy and counselling.
Nelly added: ‘It is hard to be different in this day and time. You see all these pictures in the magazine. You don’t see anyone with my condition in the magazine.
‘They want perfect but there is no such thing as perfect.’
Nelly also demonstrates remarkable generosity. The documentary follows her as she prepares for a charity skydive to benefit the dermatology ward in Coventry where she has been treated since birth.
‘They have helped me since I was a baby,’ she said. ‘It was a way to say thank you.’
Her kindness attracts kindness. The documentary ends with Nelly receiving a very special birthday present from the founder of The Samuel Hardgrave Harlequin Ichthyosis Research Trust, founded by Jamie Hardgrave in honour of his son Samuel, who died in infancy from the condition.
Mr Hardgrave gave Nelly a MicroSilk bath, a tub that will revolutionise her cleaning routine by helping to soften and remove the layers of dead skin.
She said: ‘For me it is a nice feeling that there are people out there that do think about other people. It would have taken me years to save up that money, it’s a dream come true.’
As for her advice for other sufferers? Nelly has one simple motto: ‘Live life to the fullest.’
The Snake Skin Woman: Extraordinary People airs at 9pm tomorrow on Channel 5