Wednesday 10th June 9.00pm
The documentary strand exploring extraordinary tales of human experience concludes with the story of two children suffering from congenital hypertrichosis, or ‘werewolf syndrome’. The programme investigates how genetic research may hold the key to giving these children normal lives – and potentially helping millions of others.
Seven-year-old Nat Sasuphan from Thailand was born with congenital hypertrichosis, an extremely rare and incurable disorder that causes the sufferer to grow excessive hair on the face and body. “The worst thing at school is when the new students make fun of me,” says Nat, whose father is worried that Nat’s condition will cause her to develop an inferiority complex. Removing the hair is tricky: laser treatment had bad side effects, hair removal cream leaves a rash and shaving may harm the skin.
Eleven-year-old Prithviraj Patil of Maharashtra, India, also suffers from the disorder. Prithvi’s family is concerned about the effect that it will have on his future. “First the hair must go,” says his grandfather. “Only then can he have a good future.” The family has been given new hope by Dr Amit Shah, who runs a clinic specialising in cosmetic procedures and has been performing laser treatment on Prithvi for the past nine months.
Unlike Nat, Prithvi has displayed a marked improvement since beginning laser treatment. “When the hair is gone, there is a definite change in him,” says his father. “He feels normal, like other children – and that makes him happy.” The lasers only destroy the darkest hairs, leaving the lighter ones to grow back, but Prithvi’s confidence still receives a tremendous boost with each session.
However, laser therapy is only a treatment – not a cure. Dr Shah has agreed to assist the research being done by Columbia University geneticist Dr Angela Christiano, who specialises in cracking the genetic codes of hair conditions. Dr Christiano hopes that studying the genes of hypertrichosis sufferers will help her research into baldness by shedding light on how hair changes and grows.
Studies on two other hypertrichosis sufferers have highlighted a genetic anomaly on chromosome 8, and Dr Christiano is interested to find out if Prithvi and Nat’s genes display the same defect. Strangely, Nat’s genetic makeup appears to be normal – but there is still a chance that Prithvi’s may have the same anomaly. Dr Shah takes samples of Prithvi’s blood, hair and skin to be tested, and awaits the results with interest.
Prithvi’s father is hopeful that the tests will reveal something that will explain his son’s condition. “I have a feeling that they will find out what the problem is and find a cure,” he says, confidently. However, preliminary results are unclear – Prithvi’s chromosome 8 is normal, like Nat’s, but there is a question mark over another gene known to affect hair growth. Prithvi’s family members are crestfallen, but Dr Shah assures them that this is not the end of the research. “We are not going to stop here,” he says.
Nat’s parents, meanwhile, have given their daughter temporary respite from her condition by shaving her facial hair after a test showed that her skin was unharmed by the procedure. This enabled Nat to blend in with her friends in the school play, and having a bare face for the first time since she was two years old gives her a huge confidence boost. Until there is a genetic breakthrough, this temporary solution offers Nat a chance to briefly look normal.
Because Nat and Prithvi’s condition is so rare, the medical world is not prioritising the search for a cure. However, the wider lessons that can be learned from studying hypertrichosis – and the potentially lucrative returns that could result from cracking the mystery – mean that there is a real chance that a cure could one day be found.