Rare disorder means woman’s skin grows ten times faster…and sheds like a SNAKE
Channel 5 documentary features the oldest survivor of Harlequin Ichthyosis
A Channel 5 documentary airing tonight tells the story of 32-year-old Nelly, the oldest person in the world living with Harlequin Ichthyosis.
Nelly's condition is so rare, many doctors have never even heard of it – and no treatment is available.
Only 25 people in the UK suffer from the condition, which sees skin grows ten times faster than normal.
Nusrit Shaheen, who goes by the nickname Nelly, develops agonising sores and lumps of hard skin which must be scrubbed away, and sheds around 40kg of dead skin every year.
Keeping her skin moisturised with intensive creams is a daily chore, though even that does little to relieve her crippling symptoms.
"It's a nightmare. I want to be like everybody else," says Nelly, from Coventry.
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Shocking photos show her at birth when she had just a 20% chance of survival, with her describing herself as an 'alien baby'.
But despite her suffering, Nelly's outlook is positive and she dedicates her time to working with children and fundraising.
The show follows Nelly going about her daily life, from scrubbing away dead skin, visiting doctors and meeting with friends and nervously planning a charity skydive – which no-one with the condition has ever done.
She also celebrates her 33rd birthday, with her cousins treating her to a salon manicure.
Nelly knows her condition could be life-threatening, as the most minor infection would be catastrophic.
She often feels 'worthless' because of the lack of funding into the condition, especially compared to other illnesses.
But her enthusiasm for life shines through and she says she keeps happy by taking each day as it comes.
"I am proud of who I am and all the things I've done," she says.
The Snake Skin Woman: Extraordinary People airs tonight on Channel 5 at 10pm.
Nelly's not the only one to face adversity – read our report on Zara, who had a facelift aged 16.