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

8 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.

  3. I just came across your blog and the new research! I have two daughters with confirmed cases (10 and 9) and one without (5). We went through our testing from 2008-2010. At that time, there was no one really interested in genetic testing in the US. We did participate in a large pediatric conference and met with many doctors (out of about 100 pediatric dermatologists, only two had ever seen it before). I spent the better part of two years searching for information – there wasn’t much. We were also anxious to receive a diagnosis of UHS and not something else that could be associated with further defects/issues. They had comprehensive heart exams, etc. (it was nerve-racking). Anyway, we received their diagnosis via electron scan (which took some time to have done) and essentially moved on. I was excited to come across this research. The more information, the better! We’ve seen a lot of improvement with our girls’ hair over time. Feel free to reach out – I think I submitted my email. I’ve also just gotten in touch with Regina! And I’m a fellow crossfitter :)

    1. Hi! So sorry it took me a while to reply to your message! Isn’t amazing that uncombable people seem to be crossfitters ;) My girls both have uncombable hair and the hair of our eldest daughter already looks way more ‘normal’ than the hair of the younger one. Might be the genes. Still need to send blood samples to Regina! I can imagine what you’ve gone through as my first research didn’t only bring me good news. That’s why I’m so happy with further research and participating! Thanks for your post to my blog!

  4. Hello, I am a 36 year old female and have had this condition all my life. My hair is better now that I am older and because I use a flare iron on it. Even though my hair is “tame” now you can still tell I have very different hair.

    1. I have never heard of another adult having this. I thought I was one of the rare people who had this that didn’t grow out of it. Have you found anything else that works for you? I am also a female.

  5. I was diagnosed with UHS when I was about 12 years old. I thought that maybe if I went in my twenties and got it looked at it again they may have better ways to manage it. They reconfirmed that I had it but didn’t have any more news on how to make it better. I am now 32 and still deal with this. I was told it would get better with age but it really hasn’t. I tried Biotin (as I have been told that helps) but it didn’t work. I have learned ways to manage it by doing certain things though, so that helps, but it still is an issue daily. I haven’t had a real hair cut in about 15 years (just have my ends trimmed for split ends) and my hair is still about the same length. I would be interested in going in for testing or for a doctor to look at my hair, if it will help find a treatment options. For those of you with children who have this, coconut oil has helped me a little bit. One of the main things I have always seen is that my hair will not hold oil or moisture so it’s always super dry. The coconut oil helps a bit. I also have a very good friend who does hair and has become very accustom to my situation so helps me with it. I also am able to straighten my hair with a flat iron but it takes forever, and even when I get it completely straight you can tell it’s different. Extensions have helped a little with that, as I use them not so much as to make my hair longer, but mainly to try and blend my hair in to look more normal. Hopefully some research with treatment options comes out soon!

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