Health: Faith spreads message of hope to teens
Dec 22 2009 By Kat Keogh
FAITH Barber was just 13 when she realised there was something seriously wrong with her eyesight.
Reading the blackboard at school was getting uncomfortable, numbers on buses were hard to make out and even recognising friend’s faces was becoming more difficult.
Faith, who also suffered hearing loss following a bout of meningitis as a baby, decided to share her fears with her parents Marianne and Steven.
She said: “Eventually my mum took me to the opticians after my PE teacher told her I kept being hit by the ball in the face because I didn’t appear to be able to see it coming.
“She was also worried about me because she’d noticed I was practically pressing my nose against the computer screen to be able to read what was on it.”
Her optician suspected there was a serious problem and told Faith and her mum she needed to see a doctor immediately.
“My doctor initially thought I’d suffered some kind of trauma to the eye,” added Faith, from Sheldon.
Further tests were carried out and eventually a specialist diagnosed Stargardt’s Macular Dystrophy two years ago when Faith was 17.
Stargardt’s is a degenerative eye condition which causes central vision loss.
There is currently no treatment for the condition and as yet, no cure.
The condition affects the macula, which is a small area of the retina at the back of the eye, about the size of a grain of rice. There are an estimated 500,000 people in the UK are affected by the disease and around 10 per cent of those have conditions such as Stargardt’s or Soresby’s Dystrophy.
People with macular disease rarely go completely blind, but even those with a relatively mild form of the disease will not be able to drive and will have difficulty reading, recognising faces and watching television.
At the time of her diagnosis Faith, now 19, was told that glasses would not help her eyesight and that she should prepare herself for further, progressive vision loss.
“I’d never heard of the condition,” said Faith.
“It was devastating and particularly hard to deal with as I was still so young and already suffered 50 per cent hearing loss in my right ear and 20 per cent hearing loss in my left ear.”
But she refused to let her diagnsois get her down.
“I couldn’t let it ruin my life,” she said.
“There was no point dwelling on it and at some point you just have to get on with life. My mum and dad were absolutely brilliant and gave me so much encouragement and support, they wouldn’t let me sit there and be miserable.”
Researchers are currently investigating gene therapies, intra-ocular lenses and nutrition as possible new treatments or cures to help people like Faith.
But despite an ongoing search for a cure, Faith, a former Bishop Vesey’s Grammar School pupil, was determined to carry on with her schoolwork to help her achieve a long-held ambition of running her own restaurant.
With the help of large print books, specially-adapted laptops and a note taker to help her in class, she managed to pass 10 GCSEs and two A-Levels and is now in the second year of an Honours degree in Food and Consumer Management at University College Birmingham.
As well as cooking, Faith has another passion in life – her love of music.
She said: “I love music and play in a couple of bands as a drummer and I wasn’t going to give that up without a fight either.”
Fortunately Faith’s sight loss has now stabilised, but her vision is blurry and she is now registered as partially sighted.
Along with the support of her family and friends, Faith has also turned to the Macular Disease Society to help her through.
Founded in 1987 by a group of patients and medical professionals, the society is dedicated to providing practical support so those with the condition can make the most of their remaining vision.
The charity now supports some 17,000 members worldwide and more than 170 local support groups around the UK, as well as campaigning for better treatment for MD patients.
Following her diagnosis, Faith joined the society’s Birmingham support network Working@Macular, a social group organised for younger people who have forms of MD.
She said: “The group really helps because it’s so good to talk to other younger people affected by different types of macular disease.”
As well as continuing with her studies, Faith has pressed on with her musical career.
She currently plays in band 4Q where she plays drums alongside dad Steven, who is the band’s lead singer.
She also plays in alternative rock band Sugar Suicide, which she formed with a group of her friends.
Faith said: “I absolutely love music and luckily my sight hasn’t affected my ability to play the drums.
“I love bands like Kiss, Blink182 and Ozzy Osbourne, as well as Motown and jazz.”
Faith’s musical talent came in handy recently when she staged a one-day mini rock festival in aid of the Macular Disease Society, which netted more than £2,000.
Faith said: “I really felt that I wanted to give something back to the Macular Disease Society for all the help and support they have given me and my family.”
Macular Disease Society chief executive Helen Jackman said: “Faith is a wonderful example of the determination and genorosity shown by so many young people with macular disease.
“Not only has she refused to allow macular disease to shatter her dreams, she also genorously gives her time and talent to help other, and the Society is very grateful to her.”
One glimmer of hope on the horizon is the news that clinical trials for the treatment for Stargardt’s disease could start next spring after an American company applied for permission to proceed with the trials last month.
If agreed by regulartory body the US Food and Drug Administration, the 12 patients with Stargardt’s disease included in the trial could become the first in the world to receive any kind of treatment based on embryonic stem cells.
Robert Lanza, of Advanced Cell Technology, which developed the therapy, said the application was an “important advance”.
He said: “After years of research and political debate, we’re finally on the verge of showing the potential clinical value of embryonic stem cells.”
But until a cure is found, Faith is living up to her name and has vowed not to let the diagnosis get in the way of her ambition.
“I’d like to be an inspiration to other young people with Stargardt’s Macular Dystrophy,” she said.
“I want to show that you can still chase your dreams, even if you are partially-sighted.”
* For more information on the Macular Disease Society call 0845 2412041 or visit www.maculardisease.org.
