17-month-old with rare Uncontrollable Hair Syndrome living in Suffolk

Charlotte Davis with her 19 month old daughter Layla Davis, who has Uncontrollable Hair Syndrome.

Charlotte Davis with her daughter Layla Davis, who has Uncontrollable Hair Syndrome. - Credit: Sarah Lucy Brown

A 17-month-old from Suffolk is just one of 100 people in the world to have a condition that causes her hair to be dry, frizzy, and even see-through

Layla Davis was diagnosed with Uncontrollable Hair Syndrome (UHS), a very rare syndrome that causes her hair to grow outwards, be dry, frizzy and translucent - and very blonde.

It also causes her nails and hair to be very delicate, meaning they snap and break easily at certain lengths.

Rather than hair being the commonly round shape, for people with UHS hair, it is kidney or heart-shaped, causing it to stick outwards rather than lie flat on the head.

19 month old Layla Davis, who is one of 100 people to have confirmed Uncontrollable Hair Syndrome.

Layla Davis - Credit: Sarah Lucy Brown

It is also believed that the great scientist Albert Einstein had it.

Layla, born in Ipswich Hospital, lives in Great Blakenham with her mum Charlotte, dad Kevin, and brother Freddie.

Layla was taken to a trichology clinic in Ipswich to get tested on July 14, after the NHS said it was so rare that it was unlikely to be that.

Most Read

Charlotte, 28, Layla's mum, said: "People kept tagging me on Facebook, telling me that they thought she had it.

Layla with brother Freddie

Layla with brother Freddie - Credit: Sarah Lucy Brown

"More and more people kept saying it so I Googled it and it said the hair and nails can be delicate, and the next day, her nails fell off.

"We got her tested and the doctor was so happy. He said he had never seen a live case before. He was ecstatic and he asked to take a picture of her and it has been a whirlwind ever since."

Layla was born with black hair, but it fell out when she was four months old. After it grew back, it had turned into the hair she has now.

Her mum said: "I think her hair is adorable. She is so unique and it looks so different and she gets such lovely comments.

"I want her to grow up knowing that being different is a good thing, I don't want to cover or treat it, I just want her to embrace it and love her hair.

Charlotte and Kevin Davis with their children Layla and Freddie.

Charlotte and Kevin Davis with their children Layla and Freddie. - Credit: Sarah Lucy Brown

"Lots of people give her lovely comments when we walk down the street. We went on holiday recently and we learnt how to say cute in about three different languages."

Due to the syndrome being so rare, research on it is very minimal. It is not known if Layla will grow out of the syndrome, or whether it continues with her, with only two adults in America having the syndrome.

Layla's parents have even created her an Instagram page, so that strangers can say nice things to her, and she can see the comments while she grows up to remind her how great her hair is.

Layla's Instagram page can be found here.