Toddler Locklan has unkempt hair syndrome: ‘Even GPs don’t know it’

Toddler Locklan has unkempt hair syndrome: ‘Even GPs don’t know it’
Toddler Locklan has unkempt hair syndrome: ‘Even GPs don’t know it’

Kate Samples from Georgia, America, didn’t understand. What was wrong with her son Locklan? The toddler had such unruly, light-colored hair, fluffy, and it was “extremely soft, like a chick.” It was barely combable and people looked at him, said he looked like a dandelion, sometimes asked if they could touch his hair.

But now that Kate knows her toddler has ‘uncombable hair syndrome’ (uncombable hair syndrome in English) she proudly shows the world on Instagram: this is my son’s hair. It looks like this.

“Locklan can make others smile because of the way he looks,” says his mother.

Impossible to comb flat

The disease is a genetic disorder and manifests itself between the ages of three months and 12 years. The hair is often silver-blonde in color or has a bit of a straw color, according to Orpha.net, an information site about rare diseases. Also, the hair is often dry and tangled, it often stands upright, grows in different directions ‘and is often impossible to comb flat’. Incidentally, the syndrome does not cause the child to have less hair: ‘The quantity of the hair remains normal.’

German researchers at the university in Bonn have been researching the syndrome for years. They recently published in the scientific journal Jama Dermatology results of a study that examined 107 people.

The study found a genetic cause in 80 people, and mutations in the PADI3 gene were found in 76 of the people. This codes for an enzyme that, together with keratin, ensures the production of trichohyalin. That is a protein that is very important for the hair.

Clarity through a test

“The study allows people who have unruly hair to take a genetic test,” lead researcher Buket Basmanav told the scientific (online) magazine. New Scientist know. According to Basmanav, that clarity can provide reassurance that the child does not have any major health problems. In addition, the hair becomes less unmanageable, tangled and frizzy as the child enters puberty.

Therapy

There is no real treatment, there is no other option than to either cut things short, says doctor and hair specialist Hans van Montfort, or pay a lot of special care to the hair. He points to a special comb that is suitable for difficult hair. “It is also sometimes called a roller comb,” explains Van Montfort. “That comb is also used by people who have extensions.” After all, they also have to be careful with their hair.

Orpha.net reports that doctors often recommend using soft brushes and conditioners, and treating the hair gently. “It’s fragile and can easily get tangled,” Kate agrees. “So we don’t mess with Locklan’s hair too much. We wash it twice a month and brush it when he allows it so it doesn’t get tangled.”

Washing too often is counterproductive, but doesn’t have to be, Kate assures: “It just doesn’t get oily at all.”

“It is an extremely rare disease,” says Hans van Montfort, a doctor with her as a specialty. “We do not know how often it occurs in the Netherlands, and a lot of parents – and also GPs – do not know that this exists.” For example, Locklan is one of only 100 people in the US who has been officially diagnosed with the syndrome.

“This condition is genetically determined, so congenital,” continues Van Montfort. “So you can’t prevent your child from getting it.” Everyone has the PADI3 gene, but in people with uncombable hair syndrome, that gene is mutated. “That gene determines the structure of our hair. That structure is formed by cross connections that consist of sulfur and hydrogen and that determine whether you have smooth hair, curly, fluffy, straight. People with this syndrome have a lot of these cross connections, and therefore they have a very uncontrolled transverse structure.”

Bullying lurking

And that can be quite difficult for a child, according to Van Montfort, because it looks different from ‘different’. “Bullying may be lurking. But it’s not contagious, it doesn’t make you sick, and it’s not fatal.”

Locklan does not suffer from bullies, says his mother Kate. “He’s usually not aware that his hair is different from others, and he likes the attention he gets in public.” So Kate isn’t too worried. “His older brother now knows more about the syndrome and takes care of his little brother.”


The article is in Dutch

Tags: Toddler Locklan unkempt hair syndrome GPs dont

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