Uncombable hair, new research!

‘Dear Eva, I read your blog; you have amazing children and I recently started Crossfit too!’
Mention those two things and you have my full attention.

American Journal of Human Genetics

The writer of this email turned out to be a German Professor, called Regina C. Betz. She has a research group at the Institute of Human Genetics in Bonn. They are usually doing research on hair loss disorder and rare skin syndromes. The past years however, they also researched ‘Struwwelpeter syndrome’ or ‘Uncombable hair syndrome’ or ‘Pili trianguli’ or ‘Onkambaar haar syndroom’ as we say in Dutch. She published an article about her research in the American Journal of Human Genetics.

Uncombable hair syndrome

Both our girls have Uncombable hair syndrome (Uhs). I’ve written about their extremely fizzy, slowly growing very blonde hair before. It’s very well combable btw, it’s just not so easy to tame. The hair has a will of its own, often wishes to go straight up. On the other hand; it’s very easy to braid and it looks amazing. I never knew what exactly caused it and now we do!

Uncombable research

The most valuable conclusion is that the fizzy hair both our girls have is caused by a rare genetic mutation. Regina and her team discovered that a mutation in three genes can cause the hair to be ‘misshaped’ and thus ‘uncombable’. Another thing I found interesting is that the name ‘syndrome’ is actually not applicable as in most cases only the hair is affected, it’s an isolated defect. I knew that, but it’s always nice to have things like that confirmed. Do read the article for some more background information!

Uncombable inaccuracies

The article was widely spread and received a lot of media attention. Some of it is correct, some of it is interesting on another level, or just funny.

* If you suffer a bad hair day once in a while, you don’t have Uhs. You have a bad hair day and well, live with it.
* If you have difficulties combing your children’s hair, they don’t have Uhs. If they have dreadlocks, they don’t have Uhs. Maybe use conditioner, or comb it more often?
* If you have weird hair, it’s not necessarily Uhs. You might just have weird hair (live with it).

Participate in the name of science

Regina and I spoke on the phone the other day, which was amazing. She’s extremely enthusiastic and I personally find it so nice to finally have an answer to the question what causes  Uhs. Joost and I will participate in her research, because we, of course want to know which genes are responsible for our girls’ hair.
If you suspect that you or your children have Uncombable hair syndrome, let me know! Regina would love to get in touch with you for scientific purposes.

Uncombable hair infographic

Comments

comments

2 thoughts on “Uncombable hair, new research!

  1. I’d love to connect with Regina. We’re from Calgary, Alberta, Canada and my daughter who is 15 months old has UHS too!

  2. I suspect that my daughter may have UHS. Until she was about 18 months old her hair seemed normal, although it was sparse and short. She is now 3 years old. Over time it has changed to where the hair on the back of her head is silver colored, it just sticks straight out, and it feels incredibly dry. To me it looks just like the pictures of your daughters hair. I can comb it, but I have to be careful because it tangles and breaks easily. No matter how much I comb it though, the hair just sticks right out again! The hair on the top and sides of her head is very light blond, feels kind of like cotton, and little tufts are growing in every direction. Everyone comments on her “weird” hair. I have found that rubbing coconut oil into the silvery sections of her hair helps a little. It still sticks straight out after, but it is easier to comb through. We just had her hair cut into an angled/stacked bob, which cut off some of the silver hair, but not much since it never got very long to begin with. The cut almost gives it an intentional/punk type of look which is pretty adorable. We are meeting with a geneticist next week and hoping to clear up whether she has UHS or if it’s something else, because apparently weird hair can be indicative of other genetic syndromes as well. If you think Regina would still be looking to find more kids with UHS, I would be interested in connecting with her.

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