‘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!
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!
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.