WATCH: This girl has uncombable hair syndrome (it’s a thing)
Many of us suspect that our kids’ hair is uncombable. I mean the knots, the dreads, especially when our little ones refuse to let us touch their hair.
But some kids’ hair really is uncombable.
Silver-blonde Holly was born with a head full of dark hair, which fell out – like many babies’ hair does – after a few weeks. But hers wasn’t replaced with soft, baby hair – instead, the regrowth was white, course and frizzy, standing in all directions. Her mom Emma fondly describes it as “duck fluff”.
To help her manage her little girl’s hair, Emma turned to Facebook groups dedicated to curly locks. When she saw someone writing about Uncombable Hair Syndrome (UHS), it all clicked into place.
The condition was called “cheveux incoiffables” by French researchers in the 1970s, then English researchers referred to it as “spun-glass hair”, before the current name was settled on in the 1980. There’s speculation that Albert Einstein’s famously wild, silver hair may have been down to his having Uncombable Hair Syndrome.
It is a rare genetric disorder, and there have been no more than 100 cases recorded in scientific literature, though there may well be lots of undiagnosed cases.
What are the characteristics of Uncombable Hair Syndrome?
In most cases:
- It becomes noticeable between 3 and 36 months, though there have been cases of UHS appearing as late as 12 years
- The hair grows very slowly
- The hair colour turns to straw or silvery blond
- It’s often dry, stiff or course, growing out in all directions, and won’t lie flat after being combed
- When puberty is reached, the condition sometimes improves
Why does the hair look like this?
The hair is physically different in structure to normal hair. Under a microscope one can see that these hair strands are triangular, flat, kidney- or heart shaped rather than round, with a long groove that runs along the hair strand.
Because the hair shaft has an angular shape, the hair grows out into the air instead of lying flat. The hair also reflects light differently, resulting in a “glistening sheen”.
Someone with UHS will have at least 50%, and sometimes up to 100% of their scalp hair affected.
These differences are caused by the mutation of the three genes involved with the formation of the hair shaft. And yes, this condition is hereditary.
What can be done to treat UHS?
- Love the hair! It’s unique.
- Use lots of conditioner and a soft brush.
- Braiding can help to control the hair.
- Don’t use chemical processes, such as perms, relaxers and straighteners, which is very harsh on the already dry hair.
- Research has shown that biotin supplements can help quite a lot to make the hair stronger, easier to comb and even grow faster. But you’ll have to take it for at least 4 months to start seeing an effect.
- Wait for puberty and cross fingers it gets better!
- Meanwhile, grow a thicker skin and ignore hurtful comments.
Holly is 4 years old now, and her hair has become progressively unruly. Because Holly’s hair is prone to breaking, her mom uses beard oil to moisturise her hair.
Emma says they often get stares from strangers, and even insensitive comments, but they ignore them. Instead she helps Holly to fully embrace who she is. “She is a Leo star sign, so I think of it as her little mane,” she says.
In the video we can hear Emma ask, “What do you think of your hair, Holly?”
The cute little girl answers, ”Good.”
“You like it?”
Does your child have a rare disease? Would you like to share your story and journey with us to help create awareness and break the stigma? Send to us at firstname.lastname@example.org and we may publish it.