‘I shouldn’t be approaching my 30th birthday with no hair’

Amy Johnson is 29 and has lost all her hair. Amy suffers from alopecia and she is now campaigning to raise awareness about the condition and for more research to be done. Catherine Scott met her.

UNTIL recently Amy Johnson refused to call herself an alopecia sufferer. She would have argued that she wasn’t ill, not ill like the women undergoing chemotherapy for the cancer she is often assumed to be suffering from.

“That is one of the many challenges faced by people with alopecia,” explains Amy. “The guilt of feeling terrible about your hair loss. The feelings that you have no right to feel bad. When you correct people and tell them that you don’t have cancer, you have alopecia you feel like you have to apologise.

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“However, the emotional and psychological damage of alopecia is all too real and often underestimated – by both GPs and the alopecia sufferers themselves. Because we do suffer. We suffer with the shock of suddenly losing our hair. We suffer with grief, anger and a need for answers which we never get. Because we still do not know precisely why our body does this to us.”

Amy believes alopecia sufferers are not taken as seriously by the medical profession because it’s not a life-threatening disease.

“Yet so many men, women and children are ruled by their alopecia. It stops some forming relationships, it destroys confidence and self-esteem and can lead to depression in many.”

And that is why she is now calling on the Government to take the plight of alopecia sufferers seriously and to invest money into research about the condition.

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She has launched an epetition which in its first two weeks gained more than 1,500 signatures. She needs 100,000 for it to have a chance of being debated in the House of Commons, and although she knows this is unlikely, Amy is hopeful that it will improve awareness of alopecia.

Amy first noticed she had a problem while on holiday in 2007.

“My boyfriend spotted two ten pence piece-sized bald patches at the back of my head. It was a huge shock. When I got back from holiday I went to the doctors and they said that it was Alopecia Areata. All I could think was Gail Porter and that, like her, I was going to lose all my hair,” recalls Amy.

But when the patches grew back Amy forgot all about the condition.

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“I thought, ‘I’ve had it. I didn’t lose all my hair and now I’m better’. No-one explained that once you have it you have it for life and that it can return at any time.”

It was three years later when Amy started to notice large clumps of hair falling out 
that she realised the 
alopecia was back with a vengeance.

“I went back to the GP but they just said there was nothing they could do. In the end they agreed to refer me to a dermatologist.

“The appointment took six weeks to come through and by that time I had large bald patches at the front and all he could do was offer me some steroid cream and no answers.”

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Amy, from Baildon, was able to disguise her increasing baldness at work by wearing head bands. Alopecia areata is thought to be an autoimmune condition which affects 1.7 per cent of the population. In some people it is triggered by a major life event such as an illness, pregnancy or trauma, but not all. About one fifth of sufferers have a family history of the condition.

Having spent a long time trying to work out why she developed the condition, all Amy can think is that 
it was down to a very 
painful treatment at the dentist.

“You ask the questions but they don’t have the answers. All you want to know is ‘will my hair grow back?’ and ‘why has it happened to me?’. These days we expect answers, we expect there to be research into why these things happen and how they can be cured. Because people are embarrassed by their hair loss they hide it and then it becomes a hidden disease.”

From quite early on Amy decided that she was not going to hide her baldness.

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“I’d only recently started a new job and as soon as I knew I told them, and they were all such an amazing bunch of people.”

Her hair had fallen out in patches over a number of weeks and she decided to do a sponsored head shave for a little boy with cerebral palsy.

“I think I had some mad idea that it would all grow back if I shaved it off,” she says.

“Now I either go bald or sometimes wear a scarf. You do get people looking at you and making comments but I can handle that, but I really feel for people who aren’t as confident as me.”

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Outwardly Amy seems to be a very upbeat person but she admits that even she has her down days.

“I ‘cope’ okay with alopecia. I reached the level of acceptance quite early on. But I shouldn’t have to accept that I have lost all my hair. I shouldn’t be approaching my 30th birthday with no hair, with no eyelashes so grit gets in my eyes easily, no nasal hair meaning my nose constantly drips like a tap,” she says.

It is hard for people with alopecia to come to terms with their condition and just get on with life as a bald person as there is always the thought that their hair may well grow back. For some reason after being bald for two years Amy’s hair has started to grow back in patches. “I have no idea why, or what it means. I cannot let myself get too excited. Even if it does grow back there is nothing to say that it won’t fall out again. It is a very cruel disease and that is why people should be offered counselling.”

Amy has set up a Twitter account @hairlesswhisper through which she has met other alopecia sufferers and hopes to set up a support group soon.

“It has been really helpful to meet other people who know exactly what you are going through.”