A woman whose face began to dramatically sink on one side is having her cheek rebuilt with fat taken from her stomach.
Kayleigh Crowther, first noticed the left-hand side of her face looking more sunken than usual, she thought she must be developing chiselled cheekbones, having recently lost some weight.
But when the ‘sinking’ didn’t stop, the 27-year-old realised that something was wrong.
Kayleigh says her self-esteem was shattered by the development of the condition, not helped by ignorant questions from strangers asking if she had been in an accident or had ‘cancer cut out of her face.’
Hoping that cosmetic filler injections would restore her facial symmetry, Kayleigh went to a clinic but was turned away by a medic, who told her there was something more serious afoot.
A long string of tests followed before 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.
But thankfully her confidence has been restored after she had a fat transfer procedure at Sheffield’s Royal Hallamshire Hospital in April this year.
Kayleigh, who’s from South Yorkshire, says: ‘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.
‘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.’
Kayleigh first began to notice her appearance changing when she was 17; she couldn’t pinpoint exactly what was different, but felt she simply did not ‘look right.’
When she was 18 and began going out clubbing with friends that she noticed on the photos that the left-hand side of her face was looking increasingly sunken.
‘People would say: “Haven’t you got lovely cheekbones,” – then I’d say, “It’s only on the left side, though,” she explains.
‘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, Kayleigh and her partner Scott set off on the adventure of a lifetime to live in Australia.
But as her face was becoming increasingly asymmetrical, life quickly turned into a nightmare for Kayleigh.
‘I’d overhear children saying things like; “Mummy, what’s happened to that lady’s face?”‘
She was still looking for answers when she and Scott moved to New Zealand in November 2015.
‘I was trying really hard not to let it rule my life, but I was so unhappy,’ she recalls. ‘I was pushing myself, forcing myself to go out into the world – but inwardly, I felt anxious and scared all the time.
‘I was even on anti-anxiety medication. I just couldn’t seem to pull myself out of it.’
Thankfully, in New Zealand, after tirelessly emailing plastic surgeons, she finally received a long-awaited answer.
She says: ‘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.
‘I didn’t know much about it, especially as it’s so rare, but I looked it up and remember seeing all this terrifying, worst-case scenario information, like photos of really severe cases.
‘I remember saying to Scott that I didn’t know how I would carry on and cope if that was going to be my future. How are you supposed to keep moving forward?’
According to the National Organization for Rare Disorders, PRS, the cause of which is unknown, sees 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.
Before Kayleigh could have an 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 explains.
‘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 Kayleigh’s PRS diagnosis and she was referred to the Royal Hallamshire Hospital in Sheffield, where she was placed under the care of a facial surgeon.
He instead suggested they try a fat transfer.
‘He was absolutely amazing. I trust him wholeheartedly,’ she says.
‘The fat transfer injections are less invasive, and we really had nothing to lose.’
In April 2019, during a two-hour procedure , Kayleigh 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 says: ‘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 Kayleigh’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.
‘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 adds.
‘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.’
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