Have you ever heard of uncombable hair syndrome?
A mum has shared how her three-year-old girl has an extraordinary shock of hair that regularly gets them stopped in the street by amazed strangers.
Ruby Chapman has uncombable hair syndrome (UHS) – an extremely rare genetic condition, characterised by frizzy, untameable locks, which grow out from the scalp in multiple directions and are fragile, usually silvery-blonde, and very difficult to style.
Her mum, Terri, 35, a beauty therapist, admitted she thought at first her daughter just had crazy hair and was relieved to discover UHS is a recognised ‘thing’- but she worries about how Ruby might feel about her hair as she gets older.
Terri, who lives in Gibraltar with Ruby and her husband Ross, 40, is currently expecting again – but won’t know until after the birth if the baby has uncombable hair too.
Speaking of Ruby’s ‘strange’ hair, the mum said: ‘On a windy day, it looks like a dandelion clock with all those fluffy bits blowing about everywhere.
‘Ruby was born with very dark hair but by the time she was six months old, it was very blonde and looked almost crimped.’
As her hair grew so slowly – a common feature in UHS – Ruby’s untameable locks did not cause problems until she was 18 months old, after she had a ‘growth spurt’ of hair.
‘It was so difficult to comb and it never laid flat, no matter what I did. It would just stick up all over the place,’ said Terri.
‘Ruby’s only ever had three haircuts in her life because of the UHS, but it’s only a trim on the back or on the fringe, because it doesn’t grow out evenly.’
At the time, Terri had never heard of UHS, which, according to the US-based Genetic and Rare Diseases Information Center, can become apparent at any time between the ages of three months and 12 years.
Then she bumped into one of her regular beauty salon customers as she was pushing Ruby along in her pram in 2019.
Terri said: ‘Ruby was about a year old when my client touched her hair and asked, “has she got that something hair syndrome?”
‘I went home to Google it and was staggered to see all these images of kids whose hair looked very similar to Ruby’s.’
Her emotions, she admits, were mixed.
‘It was a relief in one way to learn Uncombable Hair Syndrome was a recognised “thing” and that my daughter didn’t just have crazy hair,’ Terri added.
‘But I was concerned to learn that there is no cure for her fluffy hair.
‘Initially, I thought it was a phase that she would grow out of as she got older.
‘But as soon as I read about UHS, I just accepted that Ruby’s hair was what it was.’
Caring for Ruby’s hair is labour intensive.
Terri said: ‘We have to really look after it, so I will use a conditioner spray two or three times a day to try and keep it under control.’
When it comes to other people commenting on her hair, Terri is cautious too.
‘I am really careful to make sure we do a positive reinforcement when that happens,’ she said.
‘So when she hears a comment, I will tell her “the person who said that just really likes your hair” – but I do wish people would think a bit more about what they say in front of her.
‘I don’t want Ruby to have a complex about her hair; I want her to rock it.’
The family think Ruby likely inherited her hair type from her dad Ross, whose own hair as a child and teenager was similarly unruly.
However, he kept his hair short and found it ‘settled down a bit’ when he was a teenager – something that often happens as children with UHS reach puberty.
Now Ruby has an upcoming appointment with a hair and nails medical specialist to make sure that the gene mutation causing UHS will not cause any serious health problems as Ruby grows up.
‘I’ve read that children with this condition can also have trouble with their teeth, so we want to be prepared for any issues that may be ahead of us,’ Terri said.
‘And of course, I’m a bit concerned about how it will be for her once she starts school.
‘She’s already pretty confident about her hair though – if people tell her they like it she’ll say ‘thank you’ and give it a little toss.
‘She loves to wear her hair in different styles and I’ll carry on letting her pick how she wants to have it for school.
‘We’re not sure yet how we might handle any negative comments she gets at school but no matter what, we want her to be proud of her hair.’
Her dad Ross said of his locks: ‘It’s true that my hair, when I had hair, was also a little bit wild.
‘The kids at school used to tease me and call me Hairbrush but it did settle down a bit once I was a teenager and anyway, I always kept it very short.’
You can find Terri and Ruby on Instagram.
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source https://metro.co.uk/2021/03/09/three-year-old-girls-uncombable-hair-syndrome-gets-her-stopped-in-the-street-14211590/
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