Toddler Has Permanent Bedhead Thanks To Uncombable Hair Syndrome

June 29, 2017 | by | 2 Comments
Phoebe Braswell and her frizzy hair.

Phoebe Braswell and her frizzy hair.

A toddler has permanent bedhead thanks to a rare condition which means her frizzy white locks are IMPOSSIBLE to brush.

Phoebe Braswell, 21 months, is one of only around 100 children worldwide with a documented case of Uncombable Hair Syndrome.

It means her hair follicles are kidney-shaped instead of round, giving her fine, coarse hair which is bright white, tangled and constantly static.

Mom Jamie Braswell, 27, a trainee nurse, said people always comment on Phoebe’s ‘do and she’s even been accused of neglecting her because it looks so scruffy.

But she loves her daughter’s “unique” look and Phoebe is happy because she looks like pink-haired Poppy from Trollz – her favourite cartoon character.

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Jamie, of Smithfield, North Carolina, said: “I’ve tried dozens of products in a bid to tame Phoebe’s hair, but none have worked so far.

“Every morning she wakes up and it’s standing on end. It’s like permanent bedhead.

“Whenever we go out it’s not, ‘Oh, she is so cute,’ it’s ‘Oh my gracious her hair is crazy. You got ahold of a balloon, didn’t you?’

“We were in the grocery store once and a lady said, ‘She is going to hate you when she looks at her baby photos because you let her go out in public like that.’

“People say, ‘You should brush it better. Why don’t you put it in a ponytail?’ But that hurts her.

“Every morning it is sticking straight up and throughout the day I try and spray stuff in it to keep it down, but within 30 minutes it’s spiky again.

“It’s like somebody constantly has a balloon there and if I were to try and brush it properly she would scream, so we have to go with the flow.

“She always keeps her headband in to try and control the frizziness and keep it off her face and sometimes I’ll do a little pony to try and hold it in place.

“If she didn’t have that, people would think I was neglecting her.

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Jamie first noticed something was different about Phoebe when aged three months, strands of straw-like hair started to sprout from her scalp.

The mom-of-two, who lives with her firefighter partner Joey Coupal, 30, said: “We left it at first and just thought, ‘She’s going to have a lot of hair.’

“Then at her one-year check-up, the doctor said, ‘Has her hair always been this way?’ I said, ‘Well, yeah.’

“Everybody knows Phoebe for her crazy hair. We can’t go out in public at all.

“He said, ‘If any changes occur let me know.’ He thought it was interesting – he had never seen anything like it before.

“Then a few months ago we were looking through Facebook and saw an article about a little girl with Uncombable Hair Syndrome.

“My mom said, ‘Look at this,’ and I said, ‘Oh my gracious, that is Phoebe.’ I called the doctor and we ended up getting the diagnosis.”

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According to leading research by experts in Germany, UHS is caused by a mutation to one of three genes – PADI3, TGM3 and TCHH.

Phoebe is set to undergo genetic testing in August to determine whether she has a faulty gene.

The syndrome – which genius scientist Albert Einstein is also thought to have had – impairs the protein that gives hair its shape and strength.

So far there are around 100 cases in the world that have been diagnosed, but scientists believe thousands more may have gone unreported.

Jamie added: “You never think that your child is going to have a rare disorder, but I absolutely love Phoebe’s hair. It’s just Phoebe.

“She loves the Trollz and Poppy is her favourite, with the pink hair. When Phoebe turns two in three months she’s going to have a Trollz-themed party.

“We joke and call her our little Poppy because her hair sticks up just like the dolls.

“My hair is so thick and when I was growing up people would always comment on that, so this is completely the opposite.

“Phoebe’s five-year-old sister Raegan’s hair is just like mine – thick and brown. Her dad’s is brown too, but she has this silvery, blonde, straw-like hair.

“I do worry about her going to school because kids can be so cruel and Phoebe is the most tender-hearted little girl I have ever known.

“It’s hard for me to anticipate that people might make nasty comments, but I am going to teach her that we are all different in every way and it doesn’t matter.

“I have never seen anyone with hair like hers. It’s beautiful. It makes her unique.”

Phoebe Braswell(L) with her dad Joey Coupal, mum Phoebe and older sister Raegan.

Phoebe Braswell(L) with her dad Joey Coupal, mum Phoebe and older sister Raegan.

Dr Andrew Messenger, consultant dermatologist at Royal Hallamshire Hospital, Sheffield, UK, said that with UHS, the hair is “stiff and has a spangly appearance”.

He added: It stands out from the scalp and, as the name implies, cannot be groomed by combing.

“There is no medical treatment for uncombable hair syndrome but it is reported to improve with age.”

Prof Regina Betz is leading the research into UHS at the Institute for Human Genetics at the University of Bonn, Germany.

Speaking earlier this year she said: “In total there are 100 cases reported to date in the world but there may be many more which have not been reported.”

Category: News

Comments (2)

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  1. Cherish says:

    Bless her little heart and Bless you for taking such awesome care of her. She’ll be fine. My hair has always been very much like hers. My hair “grows” (straight up) not down like everyone I’ve ever known. I have extremely kinky hair. My hair used to be blonde just like your daughters. I had a Black hairstylist ask me one time if I had any black lineage in my family because of the texture of my hair. Here I’ll list a few tips I also tried and stuck with the ones that I found most productive in soothing my hair woes. I’ve learned to really love my hair. I used Argon oil based shampoos and conditioners. I prefer the thick creamy one they call a “mask” but it doesn’t get hard or dry out it just nourishes the hair. Then while my hair is still wet, (believe me that’s difficult to catch, because it dries out almost instantly after it’s washed) But While it’s wet, I put a very small dab of argon oil into the palm of my hands and place it into the parts of my hair that need it the most. (usually all over) I promise I never thought anything would help my hair. but this did, noticeably after the very first use. Just use it every single time. It will become easier to manage. never keep her hair up for too long in a pony tail. it can lead to traction alopecia.

    As a funny side note, I’ll mention my hair was what I referred to as water resistant. It took a long time to get it wet in order to wash it. Here is the funny part, One day we got a new puppy, he decided to climb up onto my head. Suddenly my daughter got this horrified look on her face, as our new puppy decided to vomit right in my hair. She laughed and gagged, but the thing about it was, I was able to get to the shower and get it cleaned up before it ever reached my scalp. So that’s a good thing about this hair. You don’t have to get grossed out by feeling something gross oozing into your scalp, because your hair is basically water proof, and you can get it washed up before you ever have to feel anything gross.

    Well, I truly hope you get this message and it helps you. Good luck and God Speed. also, if you do get this message, feel free to send me an email since I believe this site may share it with you if they know I don’t mind. (But only with you) Let me know how things work out for your daughter! 🙂

  2. Michele says:

    I think she is a cutie pieI’m glad you are teaching her that people are born looking different and that is what make us individuals . I’ve never seen this before but know how it is to try to manage hair like that because African Americans hair sometimes can be very corse . We do use a lot of conditioners on our hair

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