DIAGNOSIS: Liz Shiel was told the cause of her alopecia may be stress, but did not feel that her life was any more stressful than other lone parents
Parents say their children are bullied in school and often come home and ask if they're ill as others assume they have cancer
It's been almost 15 years since Liz Shiel lost her hair. Since then she's worked in television, set up an online support network, and learned to rock a wig, but she'd still love nothing more than to go into a salon for a wash and blow dry.
In 1998 Liz noticed a bald patch on her scalp the size of a €2 coin, much like one she recalled having in her youth. Over the next few months the patches began to multiply and she noticed strands of hair on her towels or around the house. By January 2000 she no longer had any hair on her head; three months later her brows and lashes came out too. "It was awful," she says. "Really distressing. My whole face was gone, I could just see two little eyes poking out and I didn't like what I saw."
After visiting her GP and being referred to a dermatologist, Liz, now 48, was diagnosed with alopecia universalis. The condition has made headlines in recent years with cases such as UK TV presenter Gail Porter. She suffers from the same condition, and has been vocal in raising awareness about hair loss. Closer to home, Irish model Amber Jean Rowan brought the condition to light when she revealed she had alopecia on RTE's 'The Model Agent' in 2009.
Alopecia simply refers to any form of hair loss, and can affect as much as 25pc of women and 40pc of men. The more severe conditions, alopecia universalis (total body) and alopecia totalis (total scalp), which come under the umbrella of alopecia areata, affect as much as 1pc to 2pc of the population at some point in their life, according to the HSE.
The HSE outlines alopecia as an autoimmune condition, and with over 20pc of sufferers having a family history of the condition, it can be genetic. Many causes are attributed to alopecia areata; chronic stress, severe shock and hormones are most common, while it's said those with eczema, asthma and thyroid disease are all more prone to the condition as well. One-in-20 people with Down's syndrome also have alopecia. But despite many potential triggers, there is no sure cause.
"I was told it was stress," explains Liz, originally from the UK, who moved to Athlone shortly after she began suffering from the condition.
"Sure, I was a working lone parent with two kids, but I had no more stress than any other lone parent. There was no big trigger," she explains. "And even after I moved to Ireland and things settled, it didn't grow back."
This lack of a cause is what Liz says makes an alopecia diagnosis so difficult. "If there was a definite cause I could accept it, but when there's no reason behind it, all you think is 'why me?'."
As hard as the cause is to come by, the cure is equally dubious. Liz said she received steroid injections for some time in Cork. "They really hurt, but my hair did start to grow back. Then I went back to Athlone and it fell out again. They told me I would have to continue getting the injections but with the side effects of steroids, I just thought, 'what's the point?'"
While there are topical medicines, injections, hair plugs and laser treatments available, some of which can be very effective in certain cases, Liz says it's important not to break the bank. "By all means do what you can, but don't go bankrupt over it, there are lotions and potions and there are lots of reputable products, but there's no one cure."
After turning to the internet for support, Liz realised there were no Irish resources for people experiencing hair loss. She decided to set up Alopecia Support Ireland, a network that celebrates its fifth birthday next month.
Now hugely successful, and a suggested resource by the HSE, Alopecia Support holds regular support groups, offers a helpline, and provides information online at AlopeciaSupport.ie about the latest treatments as well personal stories and pictures.
"For all the support it's given, I feel I get all that support back," explains Liz of the site. With up to 25 people attending meetings, Liz says this number is not indicative of the true extent of the condition. "A lot of people won't even go to their doctor about it, they don't like to talk about it, which is why online information is so important." There are over 1,000 subscribers on the group's Facebook page.
Another important aspect of Alopecia Support's work is a buddy system for children suffering with the condition. Sixty per cent of those who go on to develop alopecia in adulthood experience their first bald patch in their childhood or teens, and while Liz says the statistics are difficult to come by, alopecia is very common in children.
Liz says many parents use the buddy system to arrange play dates so their children can meet other kids with alopecia. These parents say their children are bullied in school, and often come home asking their parents if they're ill as other children assume they have cancer.
"What I'd like to do next is go into schools with workshops to teach kids about alopecia, about how there's nothing wrong with people who have it, that they're not sick, and that anybody can get it," explains Liz.
Assuming a person is ill is not just an issue linked to childhood alopecia, many adult accounts on the website also outline how alopecia sufferers are often mistaken as having cancer. Liz says she combats this by being upfront about her condition. "I don't know if I'm being defensive, but I tell people as soon as I meet them."
While Liz acknowledges most people are understanding and supportive when she tells them about her alopecia, some can be quite dismissive. "They'll say things like, 'sure it's only your hair, it could be worse', but it's not just your hair, it's your whole face."
Liz says this flippancy is what makes it so difficult for men in particular to cope with alopecia. "People just think they should get over it, but it's often harder for them, they can't wear wigs or make up as naturally as women."
Liz says she's started wearing wigs over the last four years, which have given her a new lease of confidence and allowed her to have fun with her look. She says, however, that she can empathise with those who are finding wigs difficult to manage.
"I used to be constantly going to the bathroom to check it, I was always worried about how it looked, but now I'm really used to it."
She also says how difficult it is to face people as your hair is initially falling out. "When my parents came to visit and I only had one piece of hair left, that was really tough, in the end I just shaved that last part."
On the Alopecia Support's website, many users post pictures with beautiful body paint and henna creations to play with their look, while Liz is a major advocate of semi-permanent make-up to shape her face. "I have eyebrow tattoos, so that makes it easier to fill in, it can be expensive, it's €500-€700 every three years, but it's really great and saves a lot of time. They can do it for men as well."
From setting up AlopeciaSupport.ie to learning to embrace wigs, Liz says her ethos in coping with alopecia has been all about turning a negative into a positive. In 2009 she was approached by Movie Extras to work on 'The Tudors'. "They were really nice about it, they said they didn't want to cause me any offence, and once I heard it was 'Tudors' and that I'd be in a scene with Jonathan Rhys Myers, I jumped at the chance. Then I got the bug."
Since then, Liz has played cancer patients several times on 'Fair City' and most recently appeared on BBC show 'Ripper Street', where she played a mental hospital patient with a frontal lobotomy. "Doing the extra work is such a plus," she says. "I absolutely love it."
Liz acknowledges that while she has made the most of her condition, she realises some people really struggle with it.
Her advice for anyone experiencing hair loss is to go to their GP. "Ask for blood work, get a complete check and ask to be referred to a dermatologist, don't take no for an answer."
Liz also warns to check any medication you may be on as hair loss can be a common side effect. As for coping with the emotional side of the condition, Liz urges people to reach out. "Whether it's men, women or children, we will try to facilitate their needs. Just remember to ignore any negative comments, and don't take what people say to heart, it's just a condition that not many people understand."
The 5th Anniversary of Alopecia Ireland Support Group will take place in Dublin's Red Cow Moran Hotel on Thursday, March 7, at 7.30pm. Contact Liz on 085 7575180 or visit AlopeciaIreland.ie