The pressure to fit in and appear ‘normal’ can seem overwhelming at times to many young people. But Sheffield mum Carly Swann experienced added trauma as a teenager when she suddenly developed a facial palsy.
Carly, from Wincobank, was suffering from Bell’s Palsy, the effects of which left her frightened to leave the house for almost 20 years.
She has now started to receive psychological help through the charity Changing Faces, which has also helped to develop a new specialist practitioner role at Sheffield Children’s Hospital, to support patients affected by disfigurement.
“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,” Carly said.
“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 developed her facial palsy aged 14. Doctors later discovered the symptoms were linked to a rare ear condition.
“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,” she said.
Three months later, there was no improvement, so medics sent her for an MRI scan which revealed she had cholesteatoma, a serious infection of the middle ear.
She underwent surgery to remove the infected cells, but the operation failed to cure the paralyis 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,” she said.
“I’ve had 16 operations in four different hospitals and at no stage have I ever been offered psychological help.”
Carly said other people would often tell her to ‘cheer up’, and she took to covering her face with her hands, particularly when laughing.
“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.”
More hospital visits were later needed when her youngest daughter Ashton, six, developed facial problems herself.
“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.”
A tumour was discovered in one of Ashton’s lungs which was putting pressure on a nerve. Later the tumour grew and started to become cancerous, requiring surgery to remove it.
“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,” said Carly.
“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, now 32, said Changing Faces has transformed her life.
“I had been in contact with them in London over a legal case I was fighting. They just happened to say they had a branch in Sheffield. I had been searching for 18 years for someone to talk to. My mum has been amazing, but there are some things that I can’t even tell her.”
She recently raised £1,000 by running a half-marathon with her sister, splitting the proceeds between the Children’s Hospital Charity and Changing Faces.
“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.”
Sheffield Children’s Hospital is one of only three paediatric hospitals in the UK to have a dedicated practitioner, supported by the charity Changing Faces, for young people affected by disfigurement.
Ahmina Akhtar, a qualified social worker, will work alongside the hospital’s psychology service to support children, young people and their families who are living with conditions, marks or scars that affect their appearance.
Her expertise will be available to youngsters with conditions such as severe acne, eczema, alopecia, burns and cancer.
Ahmina, who will also be out and about in the community twice a week, said: “Disfigurement is not just limited to faces, but can affect the whole body. Society can place a lot of emphasis on appearance, and this can be very daunting and overwhelming.
“Support can be tailored to the needs of the individual and can involve making them more comfortable with their condition, exploring treatment options fully and helping them to build a stronger attitude and more positive outlook.”