Have you heard of a condition known as “uncombable hair syndrome?” Well, uncombable hair syndrome is real, it is a rare condition that is characterized by extremely dry, frizzy hair that is difficult to comb.
Five-year-old Lyla-Grace Barlow has endured countless tearful mornings as her mum Alex tries brushing her hair.
She is thought to be only one of 100 people worldwide to suffer from Uncombable Hair Syndrome. Scientists believe that it is a condition caused by a mutated gene which creates abnormal hair strands that tangle and frizz to an extraordinary degree. Albert Einstein was believed to have it, too.
Trichologist Iain Sallis says:
“This hair type is very rare. It’s known as “spun glass syndrome” as the hair breaks so easily. The only thing you can do is treat it gently. Lyla-Grace Barlow is thought to be only one of 100 people worldwide to suffer from Uncombable Hair Syndrome — a condition caused by a mutated gene which creates abnormal hair strands that tangle and frizz to an extraordinary degree. Her unruly hair was transformed by Tangle Teezer inventor Shaun Pulfrey.”
She added, “Unlike Caucasian hair strands, which are oval in shape, Lyla’s glitch in her genes means her hair follicles are heart-shaped. That means a cross-section of a strand of her hair would be irregular, which creates frizz.”
Lyla’s mother Alex said, “She hates us combing it and gets really upset because it hurts her.”
Alex is 28 years old and a full-time mother to Lyla and her sisters, Emilia and Nancy-Rose who are seven, and two-years-old respectively. The mother of three revealed, “So many hairdressers have no idea what to do with it. Even stylists who specialize in Afro hair have said:
“You have to be joking. It gets so knotted it turns into dreadlocks and becomes painful to comb. She also gets uncomfortable as the hair traps heat. Normal people sweat and heat escapes through their head, but we’ve had to call 911 when Lyla overheated and started convulsing. Her hair smells like it’s on fire if she gets too hot. It can be very worrying,”
Unfortunately, Alex and her husband, Mark, 38, who resides in Derby, have tried so many products on Lyla’s hair, but none has worked.
Trichologist Iain Sallis says: “[Lyla’s] hair type is very rare. It’s known as “spun glass syndrome” as the hair breaks so easily. The only thing you can do is treat it gently.”
Alex explained that they have tried putting creams, serums, and oils to her daughter’s hair but it instead worsens, “it looks sticky and wet.”
She added, “We’ve tried several shampoos and conditioning treatments and started putting her hair in cornrows (close-to-the-scalp plaits once favored by David Beckham). Children and teachers at the school are fascinated by it.”
Lyla’s hair condition was no surprise to her mother, Alex says she knew something was definitely wrong because Lyla was born without any hair but sprouted downy tufts of bright white hair around the age of one yet her parents Alex and Mark are dark-haired. However, her initial worries took a more sinister turn when Lyla came down with a series of illnesses including bronchiolitis, pneumonia and glandular fever. Alex revealed that she had begged for genetic testing for years because she was very worried Lyla’s hair could be a sign of something far more serious. She also said that they discovered a condition called Kinky Hair Syndrome [known as Menkes disease], which affects copper levels in the body.
“Children with this have mad, wiry hair but it causes deformities and they usually die before the age of five. We were terrified that this was what she had,” She said.
Thankfully, when Lyla did have genetic testing last November, the gene which causes Kinky Hair Syndrome was not present. Her DNA was sent to a German university for further tests, which confirmed her wild mane was due to a gene mutation that causes Uncombable Hair Syndrome. Unbeknown to Alex and Mark, they had passed down this gene to Lyla.
“We had no idea we had the gene. There’s a one-in-four chance that if we have another child, they’ll have the same hair. People would say, “It’s just curly hair”, but now we know it’s a genetic condition. Thankfully, the other illnesses had nothing to do with it and were just bad luck,” said Alex.
Is there a solution to Lyla’s uncombable hair condition? One man who seems to think that there’s a solution is Shaun Pulfrey. After 30 years of working worldwide as a hair colourist with stylists such as Vidal Sassoon, Shaun invented the Tangle Teezer, a detangling hairbrush for untameable hair. Known to millions of parents for averting hair-brushing meltdowns with their children, some of the celebrities who love it and are great fans are Victoria Beckham and Emma Watson.
Shaun sells 20 brushes a minute worldwide and his company is worth £200 million. He said, “As soon as I saw Lyla’s story in the news I thought I might be able to help her,’ he says. ‘Her hair looks similar to damaged hair that has been over-bleached or straightened with too much heat.”
Here are four Simple Steps of how Shaun tamed Lyla’s hair;
STEP ONE: Tease out those tangles
First, tangles are removed with a special brush. Before wetting Lyla’s hair, Shaun uses a special detangling hairbrush (£15, Boots) to gently untangle any tight knots. The brush has 420 flexible two-tiered teeth — the longer ones detangle gently as they can bend with the hair, and the shorter ones smooth the hair,’ he says. ‘We must get rid of excess tangles because as soon as we wet the hair, any tangles could lock together and create frizz.’
STEP TWO: Avoid oils for smoothness
‘Adding any kind of normal treatment wouldn’t be of any benefit, as Lyla’s hair is genetically frizzy, so can’t be put back into a “normal” state. I want to keep product-use to a minimum,’ says Shaun. ‘Her hair is clean at the moment so we don’t want to add more shampoo or conditioner. I’d suggest her mum washes Lyla’s hair with a moisture-based shampoo and conditioner when it is dirty. I’d avoid anything with oils, which will appear to sit on top of the hair shaft and make it look greasy. ‘Today I’m spraying sections with water, which will temporarily make the hair pliable. ‘This means when we dry the hair, we can reform how the strands sit, which will leave the hair smoother and frizz-free.’
STEP THREE: Protect the hair and blow-dry
Shaun divides Lyla’s hair into about a dozen small sections and blow-dries each individually. ‘Lyla’s mum told me her hair has been known to smell of burning in the past when her hair is being blow-dried,’ says Shaun. ‘As an extra precaution, I’ve sprayed a bit of heat-protecting detangling spray which contains dimethicone (a silicone used to help hair products glide) into my palms and smoothed it on.’
As for straighteners, Shaun says: ‘I’d never dream of using them on Lyla’s hair to smooth it out. The hair is split into sections and blow-dried. Above, Lyla with Shaun Pulfrey ‘They can reach temperatures of over 200c and could easily burn her hair. Instead, I’m using a special blow-drying smoothing tool, which has fixed teeth that the hair freely flows through.‘
Often the method for smoothing hair is pulling the hair aggressively with a bristle brush and jamming the nozzle of the dryer against the brush. But here the teeth of this brush hold the hair straight, meaning there’s no pulling or stretching on Lyla’s hair, which is what caused her so much pain in the past. ‘The hair-dryer is on the lowest possible heat and speed setting and I’m keeping it an optimum distance away from the hair itself so the heat is evenly distributed and we don’t get any worrying burning smell.’
STEP FOUR: Add shine with a finishing brush
Finally, Shaun uses his finishing hairbrush on Lyla’s hair. ‘This has longer teeth with softer tips, so it’s more pleasant on the scalp. The bottom layer smooths down the cuticle and gives the hair natural shine,’ he says. ‘We don’t want to add any product on top of the hair as it will weigh it down.’ A finishing brush smooths and shines Lyla’s hair.
THE FINAL VERDICT
Thanks to Shaun, at last, Little Lyla had combed neat hair. Her mother was very excited. She said,” I’ve never seen it look so straight and shiny. She looks beautiful — but she always does.” Layla was happy too, she loved her new hairstyle. “I like it,” she said with a smile.