What Would Your Advice Be For Moms Who Have Children With “Uncombable Hair Syndrome”?

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I know you all must have heard of that rare genetic condition called uncombable hair syndrome, which is very common in young children with blonde hair?

I saw the below article WSLS10 where 3 moms shared their story about their children having the syndrome and that it was impossible to control.

See below:

These toddlers with the same genetic condition all have such uncombable hair that no amount of brushing can keep it under control.

Two-year-olds Kira White, Jaili Lamb and Charlie Eure all have the rare disorder called Pili trianguli et canaliculi, which is popularly known as “uncombable hair syndrome.”

“There’s nothing you can do to tame it whatsoever,” Kira White’s mother, Tracy, told Inside Edition. “If you take them anywhere, you probably have five or six people running their fingers through your child’s hair everywhere you go.”

“Total strangers just ruffle it,” Jaili Lamb’s mother, Sara, added.

All three girls were born with little or no hair, but once it grew in, their parents knew something was up.

One mother said the hair looked like the kids had stuck their fingers into an electrical socket.

Styling the girls’ hair always presents a challenge.

“Sometimes we will wash regularly and then actually try to blow-dry it down, like towards her hair, to get it to lay down for a while, and it works temporarily, but not all day,” Tracy said.

Uncombable hair syndrome is typically diagnosed between birth and age 3, and the hair is almost always white or strawberry blonde. There are only about 100 documented cases worldwide. It’s believed that Albert Einstein may have had the condition.

While it is a nuisance, it’s actually benign and kids often grow out of it during adolescence.

Dr. Alanna Bree, a pediatric dermatologist with the National Foundation for Ectodermal Dysplasias, looked at Jaili Lamb’s hair under a microscope for Inside Edition.

“[There is] no cure for this, but the prognosis of this is really good,” Dr. Bree said. “This is one of the hairs we see under the microscope and you can see right here that the hair has a little twist in it and because of that it makes it kind of triangular shaped instead of round and then it twists on itself.”

While all of that is strange to them I could not help but think of some of the hair types within the black community where the strands are shaped like an S or a Z causing the hair to appear frizzy but not in a negative way.

Playing devils advocate what would be your ultimate advice for these moms knowing what you know about your own hair?

Here are my suggestions

1. Stop using shampoo so often, focus on cleansing conditioners and conditioners
2. Leave the hair alone and stop trying to ‘tame’ it.
3. Rethink the way you think about hair standards because tame doesn’t have to always mean straight and down!
4. Get your braiding skills up, the hair can certainly be braided neatly to avoid tangles.
5. Use fewer combs and more fingers
6. Avoid using terms like “poor girls”, “impossible” or “strange” “nuisance”

Comment below and share your own suggestions!

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