Thousands of adults and children experience mysterious hair loss, and it can have a huge psychological impact. As International Alopecia Awareness Day on August 3 approaches, Abi Jackson speaks to women determined to help fight the stigma.

 

When your hair falls out, there's no physical pain. Yet the process, and the aftermath, can be excruciating.

"It's devastating," says Jen Chambers, a youth worker and art therapist. "Your whole sense of identity can be lost."

Jen was 11 when her hair started falling out. By the following year, she was completely bald and wearing a wig to school.

A diary she kept during those years reveals the daily anguish that having no hair brought - keeping a brave face when boys tried to pull her wig off, crying herself to sleep and wishing things were different.

A few years on, Jen's hair had grown back, but by 21 she was bald again.

Ever since, she's worn her wig every day, but recently removed it publicly for the first time, for a photo shoot and to take part in the Mersey Tunnel 10k charity run.

She also posted an album of wig-free photos of herself on Facebook, something she'd never have dreamt of doing before.

It wasn't easy - Jen admits that it took her years to reach a stage where she felt anywhere near confident enough to take this giant step.

That she's done so is symbolic of her own journey of self-acceptance, and also of her determination to raise awareness of alopecia.

Now 29, she's a trustee for Alopecia UK (www.alopeciaonline.org.uk), a small charity which provides support and information to people affected by the condition, and which is striving to raise awareness.

"When you have alopecia, a lot of people will say, 'Ah, don't worry, it's only hair'. You might feel like your world's fallen apart and everyone thinks you're being overdramatic, but it isn't just a case of getting a wig and everything carries on the same," she says.

"You might need some psychological support. You might feel 'I don't recognise that person in the mirror any more'.

"It's a really difficult thing to put into words. It's taken me a long time to get to a stage where I've kind of worked through a lot of it, and now I can put into words the impact it can have."

That impact often includes a huge blow to confidence and self-esteem. For Jen, losing her hair during her early teens, when often we're just beginning to develop our sense of identity, added to the struggle.

"I often felt that I couldn't be 'me' without hair. I was just waiting for my hair to grow, then I could be 'me'," she recalls.

But hair loss can be devastating to anybody - female, male, any age.

While it's well known that many men lose their hair as they age (known as male pattern baldness), there's far less awareness of the fact that women and children can be affected by baldness too.

Female pattern baldness (FPB), though rarer than the male version, follows the same pattern - general thinning, usually starting on the crown and spreading outwards. Like male pattern baldness, this usually worsens with age and may sometimes be linked to hormonal and genetic factors.

Alopecia can strike at any age, in men and women. Alopecia Areata (AA) is the term given to the patchy form of the condition in which roundish bald patches develop and may remain the size of a 10p piece or spread leaving a large bald area.

When the whole head of hair is lost, it's known as Alopecia Totalis (AT), and if all body hair - including eyebrows and eyelashes - is lost, it's Alopecia Universalis (AU).

There are other forms of hair loss. Telogen Effluvium, for example, is characterised by general thinning rather than totally bald areas.

The cause of AA, AT and AU is largely a mystery. It's believed alopecia could be an auto-immune response in which the body mistakes its own hair-producing cells as a threat and attacks them.

Where there's a genetic predisposition for auto-immune conditions, the onset can sometimes be triggered by factors like stress, trauma or a virus. But exactly why some people are affected in this way, and not others, remains uncertain.

It's thought that around one to two in every 1,000 people in the UK are affected, but the true figure could be higher as not all sufferers go to their doctor.

Treatments are sometimes offered, including steroid-based creams and injections but, as yet, no single treatment has been clinically proven as a guaranteed cure.

Re-growth can occur for no discernible reason. There may appear to be some logic, but for many people with alopecia the pattern of loss and regrowth can seem completely random.

It's this unpredictability that sufferers find particularly tough to deal with.

While there may be a way to go before the condition is better understood, tackling the wider issues, particularly the psychological impact, is something that can be addressed right now.

Lucinda Ellery, who runs a specialist hair loss consultancy (www.lucindaellery-hairloss.co.uk), also lost her own hair as a child and, having helped countless women over the years affected by hair loss, knows how crucial and complicated our relationship with hair can be.

"Hair is so important to humanity. A Yale University study in 1998 found that human beings subconsciously make up their minds about one another based on their hair in three seconds flat," she says.

"Traditionally the majority of people who are bald are men, so for a woman to lose their hair can be defeminising and hugely hard to deal with.

"The old saying that hair is a woman's crowning glory rings true, so losing it rips away femininity, security and, for many, can feel disempowering."

This goes far beyond aesthetics and anything superficial - it's about identity on a much deeper level.

"What do you do to make humanity feel and look uniform? You take away their hair," says Ellery. "We feel deeply attached to our hair. We're born that way; to lose it is everything to us, emotionally and physically."

Jen Chambers, along with Alopecia UK, wants to drive down the stigma for people struggling with hair loss.

"I want it to be easier for people to talk about it, and come out and say I've got alopecia," she says. "I don't want it to be something that people feel they have to keep hidden away, or feel like it's some big shameful secret.

"If people choose to wear a wig, that's great, and if they don't, that's great too, but I want to see the stigma surrounding hair loss reduced."

The charity is hoping to increase understanding among doctors too and, with funding, see more support groups operating across the UK.

"Right now we have around 25 support groups, including a couple of children's groups," says Jen. "We're hoping that figure will continue to grow. There are also online support forums, where people can go for support, or just to share their experience."

Meeting others with alopecia and finally being able to talk openly about her own experiences has been a huge boost for Jen.

"I think it really gives you a sense of relief, to be honest," she says. "That relief of meeting people who just 'get it' and know exactly what you're going through."

:: For more information and support, visit www.alopeciaonline.org.uk

:: To sponsor Jen, visit www.justgiving.com/alopeciajen