IF I CAN YOU CAN

Gillian has a rare syndrome that affects her face but she doesn't want your pity - instead she's on a mission to raise awareness, educate others and inspire positivity

- CLYDE ADAMS-VISTER

IT STARTED as a mild rash under her left eye when she was 12. At first she wasn't too worried - her doctor told her it was ringworm and that if she used the cream he prescribed it would soon clear up.

But it didn’t. Over the next few years Gillian Kgotla saw other doctors in Francistown, Botswana, where she was born and raised, but nobody could find an answer.

Meanwhile, to her horror her features started to change - it looked like the one side of her face was melting away and her left eye was caving in.

For a teen girl it was mortifying. “Every day I had a new symptom and it was altering every part of my life,” Gillian (30) tells us via video call from Sussex in the United Kingdom, where she now lives.

Her left eye became extremely swollen, then the left side of her cheek and nose started wasting away. The skin on that side of her face also hardened and became darker.

“My teeth gradually started getting loose and falling out.”

By the time she was 18 her left cheek muscles had completely wasted away, which meant she wasn't able to open her mouth more than two centimetres.

“I have to chew very slowly on the one side and I can't really do crunchy stuff or manage a big mouthful. I have to deal with little nuisances like a bit of dribbling but those are things I’ve had to learn to adapt to,” Gillian says.

And still all the doctors she consulted were unable to figure out what was wrong. It would take over a decade before she'd find out that what she was suffering from wasn't a persistent fungal infection but rather Parry-Romberg syndrome (PRS), an extremely rare condition that causes the skin and underlying muscle and bone to waste away.

“Chances are they'd never treated anyone with the syndrome because it's so rare and that made it difficult for me to get the right treatment,” Gillian says.