Woman whose face sank finds diagnosis in NZ for the rare medical condition

After a long string of tests in 2017 whilst living in New Zealand, Kayleigh Crowther was finally diagnosed with Parry-Romberg Syndrome. Photos / PA Real Life

A woman who spent years trying to figure out why her face began to dramatically sink on one side finally discovered the diagnosis for the rare condition in New Zealand.

When the 27-year-old hairdresser, Kayleigh Crowther, from Rawmarsh, South Yorkshire, first noticed the left-hand side of her face looking more sunken than usual, she thought she must have been developing chiselled cheekbones, as she had recently lost about 6.3kg.

But the left side of her face continued to shrink, leading to ignorant strangers asking her if she had been in an accident or, on one particularly distressing occasion, if her appearance was because of having "cancer cut out of her face".

Hoping cosmetic filler injections would restore her facial symmetry and stop her feeling "disgusted" by her own reflection, Crowther went to a clinic only to be turned away by a medic, who told her there was something more serious afoot.

A long string of tests followed before, in 2017, whilst living in New Zealand, she was finally diagnosed with Parry-Romberg Syndrome (PRS), a condition characterised by the progressive deterioration of the skin and tissue in one side of the face.

In April 2019 her confidence was finally restored after she had a fat transfer procedure at Sheffield's Royal Hallamshire Hospital.

"Before this, I was distraught. I knew that everybody else could see what I saw. It was soul-destroying to dislike myself that much – but now, I'm feeling the best I have in a long time," she said.

"It's been a long road and there have been times where this could have easily swallowed me up, but I now know that I am Kayleigh with PRS – PRS doesn't have me."

Crowther had just met her partner Scott Gill, 29, a tiler, when she first began to notice her appearance changing when she was 17 — at which point she could not pinpoint exactly what was different, but said she simply did not "look right".

It was when she turned 18 and began to go out clubbing with friends that she noticed the left-hand side of her face looked increasingly sunken in photos from the night before.

Kayleigh Crowther around 18 when she first noticed her symptoms (left) and when she tried to hide it (right). Photo / PA Real Life

"I had lost some weight around that time, so I thought I was finally getting chiselled cheekbones, which every girl wants at that age," she recalled.

"But in time, I realised it was only really on one side. People would say, 'Haven't you got lovely cheekbones,' – then I'd say, 'It's only on the left side, though.'

"Still, I wasn't in any pain and wasn't sure what exactly a doctor would be able to do for me, so I didn't think to visit my GP."

In January 2014, when she was 22, Crowther and Gill set off on the adventure of a lifetime to live in Australia.

But the paradise she hoped to find became a nightmare, as her face was becoming increasingly asymmetrical, to the point where people were staring and making comments.

"I'd overhear children saying things like, 'Mummy, what's happened to that lady's face?'"

By that December, she was feeling so self-conscious that on a trip back to the UK for Christmas, she visited a clinic in Sheffield, South Yorkshire, planning to get facial fillers.

However, the woman at the clinic said she didn't want to take her money and advised Crowther to find out what was causing the sinking.

Back in Australia in January 2015, Crowther was bounced around various specialists.

She was still looking for answers when, in November 2015, the couple moved to New Zealand.

Kayleigh Crowther, in 2016, when her symptoms were at their most severe. Photos / PA Real Life

"I was trying really hard not to let it rule my life, but I was so unhappy," she recalled.

"I was even on anti-anxiety medication. I just couldn't seem to pull myself out of it."

In New Zealand, after tirelessly emailing plastic surgeons, she finally received a long-awaited answer.

"A plastic surgeon came back to me, saying not to quote him on it, but that he'd seen one other case of PRS in his career and it looked similar to mine."

"So I went to the doctor armed with my MRI scans and the suggestion that it could be PRS, and finally medics in New Zealand agreed that they thought that's what I had.

According to the National Organisation for Rare Disorders, in PRS, the cause of which is unknown, the skin and soft tissues in one half of the face – usually the left-hand side – slowly shrink.

The initial facial changes, which tend to happen before the age of 20, usually occur around the cheek or upper jaw, and the severity varies from case to case.

The condition appears more typically in women than men and, while exact statistics are unknown, physicians have estimated it affects between one in 250,000 and one in a million people worldwide.

Rather than perform the free flap procedure, her doctor instead suggested they try a fat transfer. Photos / PA Real Life

The suggested treatment in Crowther's case was a free flap facial reconstruction, where flesh would be cut away from an area like her back or thighs and transplanted into her face.

"I'd been quoted $20,000 for the surgery but at that point, I'd have paid any money to feel normal again," she said.

But before Crowther could have the operation, visa issues meant she returned to the UK in March 2018.

"While I'd been away, I'd posted photos of my travels, but I had always been in control, making sure I posed in a certain way, or took them from an angle that meant you couldn't see how bad my face looked," she explained.

"But coming home meant seeing friends I'd not seen for ages. I knew they'd be shocked by how different I looked, so I had to take the plunge and tell them I'd been diagnosed with PRS.

"Thankfully they were amazingly supportive. Back home, I hit the ground running. I was so close to getting answers. I didn't want to stop."

Doctors in South Yorkshire confirmed the PRS diagnosis and she was referred to the Royal Hallamshire Hospital in Sheffield, where she was placed under the care of a facial surgeon.

Rather than perform the free flap procedure, he instead suggested they try a fat transfer.

"They are far less invasive, and we really had nothing to lose."

What Kayleigh Crowther looks like now after surgery. Photos / PA Real Life

So, in April 2019, during a two-hour procedure, Crowther had liposuction to take fat from her stomach, which was then injected into her face by her ear and hairline.

Recalling the procedure, which she had on the NHS, she said: "I came round from the surgery and was handed a mirror. I can't describe it – I looked symmetrical, like my old self again.

"I've never been so happy to see my own reflection."

Some of the fat has since broken down, meaning Crowther's face has sunk a little, but much of it has stayed, which is proof to her that the procedure was a success.

Later this month, she will be meeting medics to see if she needs a second bout of fat injections and she hopes that, over time, she will slowly be able to have her cheek entirely rebuilt.

Her self-esteem is growing in tandem, giving her the confidence to speak out and raise awareness of PRS.

"It's such a rare condition that I've only recently been able to find other people like me via a Facebook support group," she said.

"I hope by sharing my story I can show others living with PRS that it doesn't need to take over your life. You're still you.

"To everyone else out there, I'd want to say be a little kinder. Nobody likes to feel different, and those stares and comments can be awful. I was already feeling like an alien – I didn't need people looking at me like one."

She praised Gill for his unwavering support. "I couldn't have got through this without him. I didn't accept myself – but he always did.

"When I feel down, and like there is hardly anybody else out there who understands, he says to me, 'I know your condition is one-in-a-million, but you're my one-in-a-million."

- PA Life