A mum in Great Blakenham says sharing her daughter's story has had a positive impact
3-year-old Layla Davis has Uncontrollable Hair Syndrome
A mum in Great Blakenham says sharing her 3-year-olds daughters story has had a positive impact on others in the uncontrollable hair community.
Layla's hair has a malformation which means rather than growing in the shape of a cylinder, like most people, it grows in the shape of a heart or kidney due to a lack of a protein.
This also means her hair is very fragile and can't be tied back all the time.
"It cam be combed... it just doesn't lay flat no matter how much you brush it."
She told us that the condition "doesn't have many health implications other than you might get eye problems or you might have nail problems."
Mum Charlotte initially discovered the condition after friends and family kept tagging her in posts and sending her links from social media.
Layla was on her 3rd or 4th nail infection at the time, which is what made the decision for Charlotte to get Layla tested.
We asked Charlotte if she was worried about how other people may react to Layla's hair she told us it is mostly positive but she has had a few experiences where people have made comments such as "how can you let your daughter go out like that?"
But Charlotte wants to set a good example for her daughter, and so often calmly explains the situation.
"We all know that kids can be unkind sometimes, but I am doing my absolute best to teach her that her hair is awesome and we all love it. "
Since then Charlotte has made an Instagram account for Layla called Laylas_locks.
Charlotte said she wanted to set up the account so Layla could learn that "being different was a good thing" and it could be something she could look back on when she's older.
But to their surprise, the account has opened a community for them, as others with the condition have reached out to them.
"There's a whole community of fluffy-haired UHS people out there."
Charlotte said they get messages that say "oh my hairs like that" or "my daughters hair is like that."
They even had a women in her 60's reach out them who didnt realise that she had the same condition when she was little.
"She was so touched that she thought to reach out and (she) sent us photos of her as a child to show the likeness."
Charlotte told us having the community is "amazing" and she's been able to ask questions and find out how the condition has changed for others throughout their life "from being a child to an adolescent to an adult."
"The one thing I have learnt is that most of them have become hairdressers as a result of it - so I reckon Layla is destined to become a hairdresser."