For more than half her life Carly Swann was scared to go out. Now, a Sheffield charity has changed her life. She talks to Catherine Scott about Changing Faces.
For 18 years Carly Swann was frightened to leave the house because of the way she looked.
At the age of 14 she suddenly developed a facial palsy which doctors later discovered was linked to a rare ear condition. She has undergone 16 operations, but harder to deal with has been the psychological effect of what she calls her “facial difference”.
“We’d just had PE and were going on to a Maths class when my friend asked what was wrong with my face, as it looked like I’d had a stroke,” says mum-of-two Carly from Sheffield.
Doctors told Carly she was suffering from Bell’s Palsy – a temporary facial paralysis that would last about six weeks. But three months later, when there was no improvement, she was sent for an MRI scan which revealed she was suffering from cholesteatoma, a serious infection of the middle ear. In Carly’s case the disease was attacking the bones in her ear and she had to have repeated surgery to remove the infected cells, known as a mastoidectomy.
However, the surgery failed to cure the paralysis of her face.
“It was a very sensitive time. I was a teenager and although I had close friends who supported me I was badly bullied,” recalls Carly, “I’ve had 16 operations in four different hospitals and at no stage have I ever been offered psychological help.” When she did venture out people would constantly stare and ask her what was wrong with her face.
“They would tell me to cheer up. But I couldn’t smile. My self-esteem plummeted and I stopped socialising. My life was completely taken over by my facial difference. I would get up, go to work, go to the gym and come home again. I became very low.” When she did venture out she would try to cover her face with her hands, especially when she was laughing.
She did meet a man but their marriage didn’t last. They had two daughters, Madalyn, now 11 and Ashton, six, and they gave Carly the strength to carry on. But when Madalyn started being bullied at school because of the way her mum looked, it devastated her.
“I didn’t know whether to go into school for fear of making things worse for her. She is extremely protective of me.”
In the midst of dealing with her own demons, her youngest daughter Ashton, who was just one at the time, started to have problems with her eyes.
“One of Ashton’s eyelids started to droop intermittently. The doctor said he thought it was something called Horner’s Syndrome, but he said that it was always caused by something else.” Ashton underwent numerous scans and a tumour was discovered in one of her lungs which was putting pressure on a nerve.
“They said it was a benign, very slow-growing tumour and they would monitor her regularly, which thankfully they did because in September 2011 they discovered the tumour had started to grow much more quickly and had changed and started to become cancerous,” says Carly.
Doctors at Sheffield Children’s Hospital operated to remove the tumour and scanned Ashton to ensure it hadn’t spread.
“She was so lucky that she was being monitored so regularly as it meant they caught it in the very early stages which meant she hasn’t needed any further treatment. They really saved her life.”
Ashton has been left with permanent Horner’s Syndrome, which means one pupil is smaller than the other and one side of her face doesn’t sweat, Carly says it is a small price to pay.
Carly, now 32, has at last started to get some of the psychological help she needed to cope with her own facial paralysis.
“I had been in contact with a charity called Changing Faces in London over a legal case I was fighting at the time. They just happened to say they had a branch in Sheffield. I had been searching for 18 years for someone to talk to, for someone to understand just how my face had affected me. My mum has been amazing, but there are some things that I can’t even tell her. They put me in touch with Emily Wheeler and she has changed my life.”
Carly was able to talk openly and honestly for the first time about how she felt.
“I had spent 18 years hiding my face and just not dealing with it, then in the last six months my self-esteem has started to return. I have started to accept how I look, I have a great group of friends and we go to the gym and go out socialising. I feel like a different person.”
Carly recently raised £1,000 by running a half-marathon with her sister, splitting the funds between Sheffield Children’s Hospital and Changing Faces to help employ a practitioner who will support children and families in the hospital with facial disfigurements offering psychological support and advice.
Ahmina Akhtar, a qualified social worker, will work with youngsters with a range of conditions such as severe acne, eczema, alopecia, burns, cancer and limb reconstruction. The hospital is currently one of only three paediatric hospitals in the UK who offer the service which was made possible thanks to funding from The Children’s Hospital Charity.
“If I’d been aware of Changing Faces when my facial palsy started things could have been very different,” says Carly.
“The work they are doing with the Children’s Hospital is fantastic. Changing Faces has transformed my life and the Children’s Hospital has saved my daughter’s life – for this I will be forever grateful.”