Woman Calls for More Support for People with Alopecia Areata

Despite the significant psychological effects of hair loss caused by the autoimmune disorder Alopecia Areata, 23-year-old Emma Nelson from Yorkshire points out in a short film she has made, relatively little support for the condition is given by the medical community.

Emma, who lost her hair when she was entering her teens, is now campaigning to change the status quo so that people are offered more counselling and advice at the point of diagnosis. She believes that Alopecia Areata should be dealt with in the same way as a disability in terms of holistic support, and feels this extra help could prove vital to people at what could easily be one of the most difficult periods of their lives.

Cruel condition

Alopecia Areata is an especially cruel condition that strikes without warning and usually begins with one (or multiple) small, coin-shaped bald patch on the scalp. In some cases, it quickly recovers; in others it spreads. Sometimes it is a one-off incident; other times it can recur over a period of many decades. More troubling still, the related conditions Alopecia Universalis and Alopecia Totalis lead to total baldness, with complete hairloss from the whole body also evident in cases of AU.

It is one of these latter two conditions that Emma seems to have, as she is seen with a completely hairless head in her film; she also has no eyebrows. Her campaign seeks to raise awareness not just for the mental scarring that so frequently comes with Alopecia, but the astonishingly high cost of wigs, too. Emma says that she needed to save up thousands of pounds in a relatively short space of time to buy a wig that suited her.

Experts believe that all cases of Alopecia Areata and its related conditions arise after one of several ‘trigger’ incidents. These are believed to include allergies, vitamin D deficiency and chemicals, but the most-frequently suspected of all the triggers is stress be that a sudden and extreme shock, or psychological, long-term trauma. Emma believes that two years of bullying at school were the trigger for her own hair loss.

“Looking back, if I’d had someone to talk to [after diagnosis], if I’d been signposted to a counsellor to offload onto about how I was feeling, I think that would have really helped me,” she says in her video, which was made with the help of the UK charity Fixers, a rather wonderful organisation that helps people to raise awareness of issues that are affecting them.

Adds Emma: "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.”

Psychological damage not unusual

The film also features a short interview with Amy Johnson from the widely-respected UK charity Alopecia UK, who offer abundant support and advice to people with hair loss. Amy  has also lost her hair to Alopecia, and says that Emma’s story about the psychological damage of hair loss is far from unusual.

“Many people with Alopecia have anxiety issues,” says Amy. “We have some people who get in touch with the charity who struggle to leave the house, who struggle going to work. It can have a devastating impact,” she says. While some doctors absolutely do 'get' the psychological impact of hair loss, says Amy, many still just view Alopecia Areata as being “a cosmetic thing.”

“I was never asked ‘how is your Alopecia impacting you’ in any way,” says Amy. “If I’d been asked that I’d have felt that I was being taken a bit more seriously.”

Amy also agrees that the change Emma is calling for is much-needed. “We need more people to speak up, to talk to their doctors, to talk to other people,” says Amy. “For anyone who has Alopecia, although it’s not life threatening it is life-changing, so there definitely needs to be far more support given at that point of diagnosis.”

Sums up Emma: “I want to do this not just for myself, but for other people with Alopecia so they don’t feel like they’ve been forgotten.”

Not all forms of Alopecia are easily treated, and Alopecia Totalis and Alopecia Universalis treatment has a famously low success rate.

However, specialist Alopecia Areata treatment especially when the condition is diagnosed early and the hair lost to the condition is not overly severe can often produce impressive results.