It was when she noticed large clumps of hair in her hairbrush, and in the bath, that Amy Johnson knew something was wrong. The turning point came when she woke up one morning and there was a lot of hair left on her pillow.
Reaching to the back of her head, she felt a patch of cold, bald skin. “It felt like a forehead – that was the first shocker moment,” says Amy.
Until then, at the age of 26, she’d had thick, shoulder-length hair and, like most women, took pride in keeping it looking good. But now her hair was thinning, with bald patches appearing.
When Amy went to the doctor she was told: “It’s alopecia. It might grow back.”
Five months later, she had hardly any hair left. “I felt depressed. I’d worn bandanas and headbands initially but it got to the point when they didn’t cover the bald patches,” says Amy, now 30, who is from Ilkley. Deciding to raise funds for a friend with cerebral palsy, she had the rest of her hair shaved off.
“That was in July 7, 2010. By then I just had a few strands at the back of my head and was bald on one side,” says Amy, a pensions scheme manager. “I felt quite relieved having it shaved, but the mind plays tricks – I kept thinking ‘It’ll grow back now’. It didn’t, and a few weeks later I lost my eyebrows and eyelashes too. I was at my lowest ebb. There were days when I didn’t want to get out of bed.”
The support of Amy’s boyfriend, Gavin, (now her husband), and her parents, friends and colleagues helped her cope with the devastating condition, and now she’s helping other alopecia sufferers.
Amy has set up a support group, which meets every two months at the Queen’s Hotel in Leeds. “It’s the only one in Yorkshire, it’s for people from Bradford, Leeds, Calderdale and surrounding areas,” she says. “It’s a chance to share experiences, advice and support. When diagnosed with alopecia you feel completely isolated, that’s how I felt. It’s something you don’t hear much about.
“The biggest comfort I’ve had is being with other women the same age as me with alopecia. I knew I wasn’t on my own.”
Amy adds: “People with alopecia are overlooked, it’s not taken seriously enough by the medical profession. It’s complex and little is known about it. You can’t compare it with cancer, but it can be devastating to live with. It’s not life threatening, but it’s life changing.
“It can cause depression; some people with alopecia won’t leave the house. Your hair is your identity – it shatters your confidence to lose that. I felt totally alone and scared at first, I couldn’t believe it was happening to me. I remember thinking, ‘How am I going to cope with this?’ “I had odd looks from people in the street, and when my eyelashes fell out I couldn’t see in the rain, and I’d get grit and flies blowing into my eyes. When my eyelashes initially fell out my eyelids inverted twice, which was terrifying. And anyone with alopecia will tell you that, without nose hair, your nose is like a constant dripping tap, especially in cold weather!
“But most people just think of alopecia as baldness. One doctor said, ‘It’s only hair’. If it was another part of the body it’d be taken more seriously. I wouldn’t wish it on my worst enemy.”
While Amy made the decision to go bald, for other alopecia sufferers a wig is essential. “There’s a shortage of wigs, and choice is restricted. A lot of people come to the group with questions about wigs, it’s a big concern,” says Amy. “Wig provision on the NHS is basically a postcode lottery. The only wigs available are synthetic and don’t last long – a lot are the wrong size too. Wigs should be seen as a treatment option, not something cosmetic.
“With alopecia, wig referral comes not from a GP but a dermatologist, and the waiting list to see one can be eight weeks.
“I decided not to wear a wig – my attitude was “to hell with it” – but that’s down to personality. Some people won’t even answer the door without a wig on.”
There is no cure for alopecia, but there are some treatments. “You can be offered steroid injections, although my bald patches were too extensive for that,” says Amy. “I used a steroid cream for two weeks but it didn’t help. She adds: “There’s not enough research into alopecia, but it’s been linked to infection, virus, depression, emotional stress, food intolerance and physical trauma. It can also be hereditary, although I’m the only one in my family with it.
“There are misconceptions. People say it’s caused by stress, but that annoys me because there’s already shame with alopecia and it’s unfair for people to think they’ve brought it on themselves worrying about work or whatever.
“I think mine was down to physical pain. I first had hair loss patches in 2007, after I’d been in hospital with a bad ear infection.
“When I had patches again, in 2010, I was meant to have a routine filling that went into the root, leaving me howling with pain. I have alopecia areata, there’s a theory that it’s linked to the immune system.”
While most of those seeking support are women, alopecia affects men too. “Male hair loss is more socially acceptable, but it can be just as difficult to deal with,” says Amy.
“I’ve heard of men walking into the shower with hair and walking out without hair! Alopecia also affects children; parents get in touch to say their child is struggling.”
Over the last two years Amy’s hair has been gradually growing back. “I’ve got 70 per cent re-growth but still have bald patches,” she says. “I had permanent eyebrows tattooed on, which was a huge confidence boost, and I’ve now got about a dozen eyelashes on one eye and two dozen on the other. I went a while without having to shave my legs, but not now! Some people’s hair grows back, but for others alopecia lasts forever.”
Amy formed the support group after getting involved with Alopecia UK, set up by the family of a 19-year-old girl with the condition.
“In 2012 I went to an exhibition by photographer Daniel Regan called The Alopecia Project. It was the first time I’d been in a room with other alopecia sufferers, it was a turning point and helped me to deal with it,” says Amy. “Now I channel my energy into helping others.”
Earlier this month Amy organised an information day and a fundraising ‘March Mad Hair Walk’ which involved people with alopecia wearing wacky wigs.
“We’re a small charity but I want to let people with alopecia know there is support out there,” she says. “I met a lady who lost her hair over 40 years ago. She said there was no support back then – now she feels she’s not alone.”
* For more information visit alopecia.org.uk or e-mail Amy Johnson on firstname.lastname@example.org