Tag Archives: onkambaar haar

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

Uncombable hair

Lucie en BobbieIt was January 2009 when I gave birth to the prettiest girl in the world. She had the cutest dimples, she pooped a lot (we phoned the doctor in despair on the first night who put our mind at ease by saying that it’s quite healthy to poop a lot) and she had some hair. It was black and it didn’t last long. It was replaced by a white, dry, straw-type of hair that we couldn’t tame and didn’t seem to grow very fast. It was the strangest hair we had ever seen.

One and a half years later – yeah, it was a surprise for more than just a few people – I gave birth to another ‘prettiest girl in the world. ’ This one had the most beautiful mouth and the bluest eyes I had ever seen. She had some hair too. She lost it and it was – again – replaced by strange extremely blond, dry hair. It was straight, but since this was our second strange-hair-kid we knew that it might turn curly in a while.

The girls have a big brother with perfectly normal hair. We have always wondered where the hair comes from. Not only because we want to know, but because everyone seems eager to know. Let me share some remarks that people make at least once, but more often twice a day (all well meaning, let me be clear about that!)

‘Were they born in Africa?’
‘It doesn’t seem to run in the family (while pointing at Joost)?’
‘It looks like crimped hair, is it really their natural hair?’
‘Wow, that is the weirdest hair I’ve ever seen!’
‘Can I touch it?’
‘Do you highlight it?’
‘It looks like frizzy hair, yeah, I’ve seen this hair before.’

Of course I’ve asked hairdressers if they could enlighten me about the hair-type. They gave answers, but it was never fulfilling. The unsolved hair problem always lingered in the back of my head. Then someone suggested asking the dermatologist for an explanation. I had never even thought of that! We went there (for me, yes, sigh) and the girls came along. We sat down and while we waited, I took the strangest picture I’ve ever taken of the girls. (Oh and there’s the strangest video too – have a look at Instagram if you want to get a glimpse of my everyday life).

Anyway, the dermatologist walked in and we first discussed my skin. He said something about getting older, which he tried to soothe by stating that we are all getting older etc. And then I could finally ask the question. He looked, touched, googled a bit and showed me pictures of children with exactly the same hair! It took him less than a minute! Turns out that my girls have the ‘Uncombable Hair Syndrome’. It’s rare, they will have it  forever and it’s a very (very) random name for a syndrome.

Next time someone asks me where their hair comes from I get to explain that they have ‘uncombable hair’! Wow. I don’t know, I think I will just stick to my old sentence: ‘Thank you, we also have no clue where it comes from, but it’s gorgeous indeed.’