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Recalling the 'horrible' time she had as a first-year student when her hair fell out in handfuls, Jayne Waddell says it left her feeling 'less of a human being'.
Her long, brown hair was her crowning glory, she says, but she remembers thinking that if she lost her eyebrows and eyelashes, too, she 'wouldn't want to be alive'.
As well as the hair loss, her scalp felt hot and angry, 'so bad it kept me awake at night', says Jayne, now 34, and a make-up artist who lives in Glasgow.
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Jayne Waddell, from Glasgow, who has alopecia & specialises in semi-permanent make up, wearing her wig
Around two in 1,000 people in Britain suffer from alopecia areata, which causes one or more bald patches, typically the size and shape of a 50p piece, to appear on the scalp or beard - me n and women are affected equally.
The hair loss may be accompanied by a burning or tingling sensation caused by inflammation. The hair loss can be temporary, with hair often regrowing in weeks or months, but in some cases the problem can come back.
Unlike other types of hair loss such as male pattern balding, alopecia is unpredictable. Up to one in five people goes on to develop more extensive, usually permanent, hair loss, as Jayne did - where the entire scalp, and in some cases, a man's beard, is affected, a condition known as alopecia totalis (if the body hair is affected, it's known as alopecia universalis).
Alopecia, which affects up to one million people in Britain, has traditionally been viewed as a cosmetic skin problem.
Women may be offered wigs, sometimes on prescription, while the main treatment for alopecia areata is steroid injections into the scalp or creams, which may boost hair growth, although their long-term benefits haven't been proven and a potential side-effect is the skin thinning.
However, breakthrough findings, published five years ago, could help pave the way for more effective treatments.
She has retrained as a semi-permanent make-up artist and set up in a wig shop (L, pictured without her wig)
Research has now shown that alopecia is in fact an auto-immune disease - one of a group of disorders including type 1 diabetes, rheumatoid arthritis and multiple sclerosis, where the immune system attacks the body's own ti ssues.
A study published in the journal Nature in 2010 found that people who are susceptible to alopecia areata share the same genes as those susceptible to rheumatoid arthritis and other serious auto-immune disorders - suggesting alopecia patients should respond to new 'biological' treatments that block the proteins responsible for rheumatoid arthritis and potentially other auto-immune diseases.
The protein linked to rheumatoid arthritis is tumor necrosis factor (TNF), which activates the immune system to attack cells in the joints, causing the pain and swelling.
In 2002, the first of a new type of 'biological' medication known as a TNF blocker was launched - by blocking the protein TNF, these drugs are more effective than the steroid tablets or injections previously on offer.
'The immune system is a hugely complicated system, but TNF blockers show wha t can be done,' explains Iain McInnes, director of the Institute of Immunology and professor of experimental medicine at Glasgow University.
Jayne's work brought her into contact with other people with alopecia
Initial hopes that TNF blockers might also help alopecia were dashed by research in 2006. But there's recognition that an effective medication for alopecia, built on the same model as TNF blockers, could be developed given the will - and funding - to carry out the research. So far it hasn't happened.
'People with alopecia have missed out compared to those who have what are regarded as more serious auto-immune diseases,' admits Professor McInnes, who helped pioneer research techniques leading to new treatments for rheumatoid arthritis.
Since I developed alopecia there's been so much progress in treating auto-immune diseases, including MS and psoriasis as well as rheumatoid arthritisA large part of the problem is that funding bodies 'don't see alopecia as sufficiently severe to merit serious investigation - despite the evidence that it's psychologically devastating, damaging the lives of sufferers and their families', adds Dr Rachid Tazi-Ahnini, of the department of infection and immunity at Sheffield University Medical School.
It was frustration about this lack of progress that prompted Jayne to launch the charity Autoimmune Alopecia Research UK (AAR-UK), in 2012, to raise money to fund better treatments.
'Since I developed alopecia there's been so much progress in treating auto-immune diseases, including MS and psoriasis as well as rheumatoid arthritis. But not a thing has changed with alopecia. We're all still being referred to a dermatologist, who tells us nothing that can be done.' Her experience has been far from unique. She first develop ed alopecia at 18 and was referred to a dermatologist. She was told the only treatment was a steroid injection, but she was put off by the potential side-effects - in any case, it cleared up on its own in less than a year.
But when her hair began to fall out again two years later when she was at university, this time in larger clumps, she knew straight away that she was going to lose it all. 'The burning sensation in my scalp was so powerful,' she recalls.
She also became an agent for a New Zealand company, Freedom Hair, that aims to make natural-looking wigs
With 30 per cent of her hair left, Jayne shaved off what was left and put dark make-up on the bald patches to match the dark fuzz.
'For a few weeks, I was walking around bareheaded. I had no idea how to get a proper wig and the ones I tried were too scratchy and uncomfortable to wear,' she says.< /p>
'GI Jane was popular at the time and I thought I might get away with it. But you look so ill; everyone assumes you've had chemotherapy. And when you lose your eyebrows, you lose expression on your face.'
100The average number of hairs we shed every day
By the time Jayne had lost her eyebrows and eyelashes, too, she'd dropped out of university and moved to Ireland to work with horses, 'trying to find myself' - and stayed for ten years.
She eventually returned to Glasgow in 2011, feeling at her lowest ebb. A year on, however, things were looking up. She'd retrained as a semi-permanent make-up artist and set up in a wig shop, offering micro pigmentation, a form of tattooing, giving clients natural-looking eyebrows.
She also became an agent for a New Zealand company, Freedom Hair, that aims to make natural-looking wigs that won't slip off.
Jayne's work brought her into contact with other people with alopecia, whose struggles spurred her to launch Autoimmune Alopecia Research UK.
Jayne pictured with charity workmates Aimee Young (left) and Alison Nicho lson
Jayne's charity is calling for GPs and other doctors who diagnose alopecia to explain to people that they have a genuine disease - on a par with multiple sclerosis and rheumatoid arthritis - rather than dismiss it as a cosmetic problem. It is also setting up a biobank containing hundreds of samples, including blood, tissue and the bacteria that live in the gut that are now believed to have a significant impact on the immune system.
Professor McInnes, whose department is involved in the venture, says: 'At the moment, we don't understand why hair follicles are targeted by the immune system in this way. But the hope is that by analysing the samples in the biobank we will be able to find a drug that will interfere with this process.'
Indeed, the benefits of investigating alopecia could spill over to other auto-immune diseases, including type 1 diabetes, thyroid disease and vitiligo, a ccording to Dr Tazi-Ahnini. 'The fact that the auto-immune response in alopecia occurs in accessible tissue means alopecia areata is an excellent model for auto-immune disease,' he says.
Already there are candidates for a drug to treat alopecia: last year, a study showed three people with moderate to severe alopecia experienced 'near complete hair regrowth' after five months treatment with a biological drug, Ruxolitinib, currently licensed to treat bone marrow disorders.
So far, 270 UK alopecia sufferers have signalled their willingness to donate samples to the new biobank. 'It's so exciting,' says Jayne. 'It will mean that any research group that wants to pursue a particular area of investigation can have access to as many individual samples as they need.'
To help support the charity's work setting up a biobank go to walacea.com/campaigns/alopecia-biobank
Source: How blocking your immune system may help women beat hair loss
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