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A rare syndrome stole half my face but won’t take my life – I always smile at my reflection despite what strangers say
Gillian believes a common childhood illness triggered her "aggressive and devastating" condition
A WOMAN living with a rare condition that caused half her face to cave in is asked on social media if she hates the way she looks.
Fortunately, it's an easy question to answer for Gillian Kgotla, 29, who has fully accepted being disfigured.
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She shares how she always smiles at her reflection in the mirror and her motivational videos online are gaining lots of attention, with her going viral with 2.2million views on Facebook.
Gillian was not born this way. Once a chubby baby with a perfectly symmetrical face, it was only when she turned 12 and got ringworm that Parry-Romberg syndrome began to take over.
Gillian, who lives in Sussex, didn’t know what it was at the time and has only been formally diagnosed this year.
"It all started when I was 12 and developed ringworm under my left eye," she said.
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";Doctors gave me topical creams to use. But the rash came back and became itchy.
"After that, my eye became painful, red and swollen and my face started to melt away. It was so aggressive.
"One day my eye was shrinking, next my nose was wasting away, then my cheek. The skin started hardening and darkening too.
"Every day I had a new symptom, and it was altering every part of my life.
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"I was in good physical health overall and all my blood tests were fine.
"I still went to school, but friends would ask, 'What’s wrong with your face?'
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"I didn’t have any answers. Thankfully I had beautiful and amazing friends who always looked out for me."
Over the years, Gillian lost her hair, some teeth, soft tissue, and her left eye caved in.
"My family were devastated, and my mum was so worried about me she began suffering with high blood pressure," she said.
"She, like our whole family, became desperate to know the cause."
As a teenager, living in Botswana where she was born, Gillian hated her reflection in the mirror and didn’t like seeing photos of herself.
"I realised I needed to create coping mechanisms," Gillian said.
"I studied hard to become the best student in every subject and read lots of books, which helped me deal with bullying.
"One child called me ‘half a face’, which really upset me. But the more I educated myself, the better equipped I became at dealing with hurtful comments."
The emotional toll has been devastating as I have had to fight to live a normal life
Gillian Kgotla
Self-development books helped Gillian work on acceptance and with time, and lots of self-care, she learnt to love her appearance.
"I would visit the library to read with friends and found the power of learning helped me massively and prepared me for if anyone stared or called me names," she added.
Gillian was 21 when she met her husband.
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"When we met, I had built confidence already and my condition was never a topic," she said.
"My husband was just interested in the person beyond my appearance – and was impressed with how wise I was."
The couple married in 2018 and moved to the UK in 2022.
After 18 years with no answers, she stumbled across a young man on TikTok called posting about Parry-Romberg syndrome.
It was the first time Gillian had been made aware of the condition and she began to research.
"As soon as I saw Lukas’s videos about living with Parry-Romberg syndrome, I knew straight away it was what I had too," Gillian said.
"I had CT scans and MRIs to determine what I had and then an eye doctor who had seen the condition before, confirmed I had it.
"I’ve found an experienced specialist in India who can perform three life-changing surgeries to restore my face and improve my quality of life, so I’m humbly requesting donations on to help cover the surgeries and travel expenses.
"As well as deforming my appearance, the condition has brought constant pain, alopecia, severe migraines and vision problems.
"The emotional toll has been devastating as I have had to fight to live a normal life."
What is Parry-Romburg syndrome?
PARRY-Romburg syndrome is a rare condition affecting the skin and soft tissue on one side of the face.
It normally starts in childhood and causes the skin and soft tissues to waste away.
This usually continues for between two and 10 years before becoming stable.
The underlying muscle and bone may also waste away, causing problems with eating and speech, and altering the patient's appearance.
This can often mean someone with Parry-Romburg syndrome looks as though their face as 'sunken in'.
The exact cause is not yet known, but it is thought to be connected to trauma, infections, hormonal problems and autoimmunity.
It is also unclear exactly how many people have Parry-Romburg syndrome, though estimates suggest it could be as many as one in 250,000.
There is currently no cure or specific treatment.
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Despite having had her world turned upside down, Gillian shines with positivity and refuses to let Parry-Romberg syndrome dampen her spirits.
"I am so grateful to be able to live my life every single day," she said.
"My mum constantly tells me I am a ray of sunshine and she is the one who encouraged me to start spreading my optimism to others."
Gillian, who works in finance technology, created , and (@gilliankgotla) accounts and dishes out positive content every day.
"I get lots of DMs," said Gillian. "Someone asked me if I hated myself because of how I look, and I told them, 'No, I don’t'.
"It frustrates me when I see people moaning online about the smallest things. Brits complain about everything!
"But if people with small worries get a glimpse of my life, maybe they will learn to feel gratitude for what they have."
It is thought some possible causes of Parry-Romberg syndrome could include trauma, infections, hormonal problems and autoimmunity.
But in her case, Gillian believes the ringworm she had as a child triggered it.
Now, she can’t open her mouth more than 0.8in (2cm) so struggles to eat like she used to.
'BEAUTY IS A FEELING'
She says if she gets the opportunity to have reconstructive surgery, she will jump at it - just to be able to bite into a burger.
"I eat like a lady," Gillian said. "I chew on one side and take small sips when I drink, though I might dribble.
"The vision in my left eye is reduced and the hearing in my left ear is not as good as in my right.
"I have lost half of my face and I’m not ‘normal’, but I still have a functional body and can live life beyond how I look.
"I get many people staring at me in the street, but they might be seeing someone with PRS for the first time.
"So I just smile at them and tell myself they are looking out of curiosity rather than hate.
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"Self-love means I have to love my not-so-perfect face.
"Beauty is a feeling, not how you look. I’m just grateful I’ve made friends with the mirror and I hope others can learn to do the same too."
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