Woman gets uncombable hair syndrome diagnosis after radio interview

Suzanne McCulloch never received a diagnosis for her hair when she was younger

A 67-year-old woman who grew up with unusually fluffy hair has finally received a diagnosis after listening to a BBC local radio interview.

Suzanne McCulloch, from Brighton, grew up with uncombable hair syndrome, but did not know it was a recognised condition.

The story of three-year-old Layla, who has the syndrome, was broadcast on BBC Radio Suffolk in February.

"I held my breath as I listened," said Ms McCulloch.

"It was like hearing my own experience repeated back to me.

"I've never known why and never come across any descriptions, or seen anyone else with that wonderful hair."

Suzanne said she has never met anyone with uncombable hair syndrome before now

The rare condition causes "fluffy" hair that grows in an outward shape, due to a lack of protein.

"I've been doing some research since now I know it has a name, so that's been really interesting," she continued.

Although Ms McCulloch's hair began to settle down in her teens, she said she had "plenty of evidence of fluff"

Ms McCulloch's hair began to settle down in her late teens and she hoped to share her experience with Layla's family.

"I was obviously called names when I was at school... but actually, I don't feel that I was being bullied," she said.

"I used to get called 'candy floss' and 'fluffy hair' and 'dandelion' - I thought those things were really cute and really nice."

Layla told BBC Radio Suffolk that she loved her hair

Layla's mum, Charlotte, said: "It's my job as her mum to equip her so that she can deal with things when they're not so positive and I think by doing this, it's working."

Charlotte created an Instagram account to help educate people on the syndrome.

"It's really nice that it's made a difference to people and especially people like Suzanne, who perhaps didn't know that uncontrollable hair syndrome was a thing, and then can now explain so many different aspects of their life. It's brilliant."