Woman who lost her hair aged 12 after she was bullied launches a campaign for better support for people with alopecia

Emma Nelson was just 12 years old when her hair started to fall out.

She believes two years at the hands of school bullies caused such stress that it lead to alopecia and she was told her hair would never grow back. Not just the hair on her head but all her body hair including her eye lashes and eyebrows.

“Alopecia is an autoimmune disease but the doctors said there is usually a trigger, either an accident or high stress and they think that’s what happened to me.”

Emma went through years of turmoil which she says affected her mental health leading to depression and bouts of serious anxiety.

Now 23, Emma from Harrogate is lobbying for alopecia sufferers to be given more support both emotionally and financially.

She has teamed up with Fixers, the charity that gives young people a voice, to make a short film to get her message across.

“I just want to fit in and be a normal person, not someone defined by alopecia,’” says Emma. “But the effect on my life of living with alopecia is huge. I feel that we’re pushed to the back of the shelf and forgotten about.”

Emma says that living with alopecia can also come with a significant financial toll as well as an emotional one.

Her film highlights the costs associated with buying, maintaining, and replacing wigs.

“The wigs you are offered on the NHS really do nothing to help you self esteem and body image.

“I’ve had to save up thousands of pounds over quite a short space of time in order to get the wig that I feel comfortable wearing. If I lived in New Zealand where my wigs are made I would received some subsidy from the government, but in the UK we get nothing.

“If you want long hair then you have to pay more, if you want blonde hair then that costs more. The NHS seems to treat alopecia as a cosmetic issue where it is far more serious than that and that is what my campaign is highlighting.”

Following her diagnosis, Emma became depressed and suffered a lot of anxiety about her body image.

“I think I blanked out my emotions from diagnosis until I was about 16 and really started to care what I looked like. It was then that I became really self-conscious and had a lot of anxiety and depression,” says Emma who has just moved from her home in Harrogate to London.

“Looking back if I’d had someone to talk to, if I’d been signposted to a counsellor to off-load onto about how I was feeling, I think that would have really helped me.

“It’s really surprising that there’s no psychological support around the diagnosis which is when people really need it. I did get some support later down the line but there was nothing at the time I was diagnosed.”

Emma, herself a nurse, is also working to raise awareness amongst the medical profession to the seriousness of someone losing their hair.

“The attitude from medical professionals seems to just be ‘it’s only hair loss, you can get on with it, hide it’.

“We’re just told basically to get on with our lives without hair, but it’s not that easy. It isn’t just cosmetic. We have hair on our bodies for a reason. I am very active but when I do exercise the sweat goes straight into my eyes because I have no eyebrows to stop it. I get cold very easily as I have no hairs on my arms to help keep me warm.

“People also tend to associate hair loss with cancer treatment and I see people in the street looking at me sympathetically and some will even ask how long I’ve been having chemotherapy and I have to explain that I don’t have cancer I have alopecia, but because my illness isn’t life threatening I don’t get the support.”

Emma’s hair has grown back sporadically in patches, only heartbreakingly to fall out again.

“I now keep my head shaved,” she says. “Mainly to enable my wig to fit properly but also it is difficult to continually cope with the agony of its coming back in patches and getting your hopes up only for it to fall out again.”

Amy Johnson from Alopecia UK is supporting Emma’s campaign.

“Many people with alopecia have anxiety issues. We have some people who get in touch with the charity who struggle to leave the house or who struggle going to work and it really can have a devastating impact,” says Amy.

“Some doctors understand the psychological impact of hair loss, but for many they still just view alopecia as being a cosmetic thing. Although it’s not life threatening, it is life changing, and so there definitely needs to be far more support given at that point of diagnosis. I think it would be really exciting if this went further and that people started to listen to us and changes were made.

“I don’t want people with alopecia to feel like they’ve been forgotten.”

Emma says Alopecia UK has been a great help to her although it has only been around the last few years.

“It would have been great to have had the support network that Alopecia UK now has when I was first diagnosed. But doctors need to signpost people to Alopecia UK so that they can get the support the desperately need.”

She says awareness of alopecia has grown recently especially since Olympian Joanna Rowsell talked about her condition during the London 2012 games.

It is only fairly recently that Emma has felt confidants enough to talk about alopecia openly and strong enough to make the film she felt she needed to make.

She is also in the process of launching an online petition, asking people to sign up to lobby for more emotional and financial support for people diagnosed with alopecia,

“Alopecia can affect any one, man or woman, young or old - it can happen at any time in your life,” she says,

“It is time that people with alopecia were given the support they need.”

Alopecia Areata (AA) is understood to be an autoimmune condition. The immune system which normally protects the body from foreign invaders, such as viruses and bacteria, mistakenly attacks the hair follicles.

There is no cure for alopecia Areata or universally effective treatment

Fixers works with young people aged 16-25 across the UK by providing them with professional resources to help them campaign on issues they feel strongly about.

For more information or to make a donation to fund more Fixer projects, visit www.fixers.org.uk

For more information on Alopecia UK visit www.alopeciaonline.org to uk