Five’s acclaimed documentary strand continues with another remarkable tale of human experience. The Girls with Too Much Skin explores the lives of two sets of sisters who suffer from one of the most extreme skin diseases in the world. Lucy and Hannah Betts and Dana and Lara Bowen have harlequin ichthyosis, a painful and incurable condition that brings with it the constant threat of fatal infection.
This rare genetic disorder means that sufferers grow more skin in one day than a healthy person grows in two weeks. The Betts and Bowen sisters all inherited the condition from their parents, who carry the mutated gene. Historically, those stricken with the disease did not live long, and these days there is a 50 per cent survival rate.
Clive Betts confesses that when he first saw Lucy, his first-born, he did not expect her to live. Both Clive and his wife, Jan, were unaware that they carried the gene, and the way Lucy looked came as a huge shock. “She looked more like something from space – like an alien,” Clive says.
According to Professor John Harper, a defect in the skin, the body’s largest organ, brings with it a multitude of problems: “They’re just not compatible with living.” With no true epidermis, the thick layer of skin can crack, making it vulnerable to infection. The Betts and the Bowens have similar routines to prevent this from happening. Twice a day, the girls endure an excruciating exfoliation process. After bathing, their bodies are slathered from head to foot in a rich barrier cream. Hannah is philosophical about the discomfort, saying, “Sometimes it’s a pain in the neck, but we have to deal with it, you see.” It is not just the girls’ bodies that need to be clean.
Every day, their houses are sterilised and their bedclothes, which overnight become saturated in the barrier cream, must be laundered. Despite the heartache of having two daughters with the disorder, the Betts family is grateful for each girl having a support system in the form of her own sister. With Lucy legally blind because of dead skin cells scratching and damaging her corneas, Hannah becomes her sister’s eyes when the girls are out and about. And as Hannah suffers from cerebral palsy, Lucy’s role as big sister becomes vitally important. Hannah realises she would be lost without Lucy. “If I didn’t have a sister with the same condition, I’d be lonely and I don’t know what I’d do,” she confesses.
With only six other sufferers in the UK, the Betts and the Bowens have a strong bond. But neither family realise just how closely connected they are until the girls’ DNA is analysed. While researchers try to isolate the harlequin mutatation, no one expects what other secrets lie locked inside the genetic code. With a particular irregularity in their DNA in common, it can mean only one thing – the two families are related by blood. As doctors shed light on the intricacies of the disorder and work towards finding a cure, the two families themselves find new hope as they try to solve the genetic mystery that lies buried in their past.
Wednesday 12th March at 9:00pm on five