Growing up can be hard enough, but for those with vitiligo the normal teenage worries about appearance are increased significantly.
Natalie Ambersley was too young to remember when the first white patch of skin appeared on her hand.
She was 18 months old and, being mixed race, the patch was immediately obvious. Her parents arranged for her to see the GP but, as Natalie says, ‘The doctor had no idea what it was or why it had developed on my skin. Back in the 1980s, vitiligo wasn’t a common condition and was therefore hard to diagnose.’
Vitiligo is still not properly understood
More than 30 years later and there is much that is still not properly understood about the cause of vitiligo. It is considered to be an autoimmune disorder, where the body’s immune system attacks its own tissues, causing the skin (and sometimes the hair) to lose its pigmentation.
Mum signed me up for new treatments and experimental trials. I was always trying out some cream or other.
What is known for certain is that the condition affects about 1 per cent of the population, occurring equally in both sexes and and all races. The condition isn’t contagious but there is a genetic link. While vitiligo can begin at any age, the tell-tale white patches appear before the age of 20 in about half of all cases.
By the time Natalie was three, the patches had spread to her arms, legs, and face. It was a dermatologist at Great Ormond Street Hospital in London who was finally able to diagnose her with the condition. From that point on Natalie’s childhood was punctuated by, what seemed to her, like an endless series of hospital visits.
‘Mum was keen to sign me up for new treatments and experimental trials. I was always trying out some cream or other, but nothing seemed to work,’ she says.
Treatments to re-pigment the skin
While different treatments exist for vitiligo, none of them come with guarantees. What can be successful in re-pigmenting the skin in one patient will prove ineffective in another. Even if a treatment works, the vitiligo may return.
Natalie had some results with steroid cream. Applied twice a day to the affected area, the cream was successful in clearing up the patches on her face.
My parents never made me cover me up or feel as if there were things I couldn’t do.
She counts her blessings in that, throughout her childhood, Natalie’s parents never made her feel self-conscious about her appearance. ‘I wore shorts in summer, I went to the beach. Everybody knew I had the condition, but it wasn’t a big deal,’ she says. ‘My parents were very empowering. If they ever caught anyone staring at me, they’d make a remark, letting them know it wasn’t an acceptable thing to do.’
All that changed when Natalie was 12 and her parents moved from East London, where she’d grown up, to Essex.
Struggles at school
A predominantly white area, Natalie was one of the few pupils in her school from a mixed race background, and the only one with vitiligo. ‘Seniors school was really hard,’ she says, recounting instances of name-calling. Being singled-out because of her skin meant that all her normal teenage worries were amplified.
Along with the usual teenage worries like spots, exams and boys, there was also this…
By the age of 13, she decided not to have any more treatment despite wishing she could make the condition disappear. ‘I’d had enough of hospitals and decided to leave my skin to do what it wanted to do,’ she says. Natalie stuck with that decision until turning 30 when she decided she’d give treatment one more try to see if there was any hope of something working.
One final treatment attempt
Narrowband UVB is a form of light therapy used to stimulate pigment cells in patients where vitiligo affects at least 20 per cent of the body. Treatment is intensive and Natalie underwent around 50 sessions over a 13-month period.
I was getting up at 5.30am to attend hospital twice a week, before starting work.
The commitment paid off and, after four months, Natalie’s natural skin colour began to return. When treatment finished, ‘a whole new world opened up,’ she says. Her confidence increased and, although some patches of affected skin remained, she could do those things she had stopped herself from doing before, such as go the beach without feeling awkward.
Support from all around
Natalie credits organisations like The British Skin Foundation, Changing Faces and The Vitiligo Society for providing support when she was at her lowest.
There are also vitiligo support groups on Facebook and Instagram where sufferers from around the world share photopraphs of their condition and celebrate each other’s differences. As Natalie puts it, they help those with vitiligo ‘feel like they’re not alone in the world.’
Visit Natalie’s blog beingjustus.co.uk to learn more about her experience with vitiligo.