'Alopecia is a big part of my life, but it doesn't define me': Teenager, 15, who lost all her hair to the disease fronts new awareness campaign
- Joelle Amery realised clumps of hair were falling out when she was eight
- The 15-year-old suffered cruel taunts from bullies who called her 'cancer girl'
- She was diagnosed with alopecia universalis and lost hair all over her body
- Today the teen is fronting a new campaign with the charity Alopecia UK in a bid to raise awareness and urge the government to research the condition
Joelle Amery is the face of a new Alopecia UK campaign, after losing all her hair when she was eight years old
As a child she endured the cruel taunts of her peers labelling her 'cancer girl' and making light of the fact she had no hair.
But Joelle Amery has never been diagnosed with cancer and she's never had to undergo chemotherapy.
When she was eight she started to notice her hair was falling out in the shower. Within a few months she was completely bald.
Like more and more women across the UK, the teenager, who is now 15, lives with alopecia - the medical term for hair loss.
And today she is fronting a new campaign with Alopecia UK to raise awareness as experts say an increasing number of people are being diagnosed with the condition.
She said: ‘I am thrilled and honoured to be part of this charity which is close to my heart, as I feel the work of the charity is so valuable.’
Joelle developed alopecia universalis - the most extreme form of the condition which results in complete hair loss from the whole body - at the age of eight.
She was bullied as a result and it was not until last summer, six years after developing the condition, that she revealed herself without a wig for the first time.
She became an internet sensation when a video she released of her music video went viral and received 200,000 hits on YouTube.
However, she told her story to MailOnline, explaining that her flowing brown locks in the video were actually a wig.
She also spoke about the condition and the bullying she experienced as a result.
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Her story was shared across the world and she features on news channels in the UK, China, Brazil the U.S. and Vietnam.
Since speaking so openly about her condition, Joelle said she is now finally comfortable in her own skin.
She said: 'I have accepted that alopecia is a big part of my life, but it doesn't define me.'
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The 15-year-old endured the cruel taunts of bullies, being labeled 'cancer girl', by youngsters who did not understand the hair loss disease
Joelle said: 'I have accepted that alopecia is a big part of my life, but it doesn't define me'
The teenager became an internet sensation after releasing a music video on YouTube last year. She revealed the long brunette locks in the video were in fact her wig when she spoke about her condition for the first time to MailOnline
WHAT IS ALOPECIA?
Alopecia is a hair-loss disease that affects, men, women and children.
The onset is often sudden, random and frequently recurrent.
Although the disease does not damage a person's physical health, it can have severe effects on quality of life and emotional health through its impact on confidence and self-esteem.
Alopecia affects around 1.7 per cent of the population, with men and women equally affected.
About 25 per cent of people affected have a family history of the condition.
The exact cause of alopecia is not known, although experts generally agree it is a disease of the immune system.
There is believed to be a genetic component and in some cases it is linked to stress.
In alopecia, the immune system attacks the affected hair follicles by mistake.
That halts hair growth and causes hairs to abruptly shed.
There are several different types of alopecia, ranging in severity. Alopecia Universalis is the total loss of hair across the body, while Alopecia Totalis is loss of hair on the head alone.
The vast degree of sufferers will experience some re-growth, some complete re-growth.
To find out more about the condition visit Alopecia UK here.
As a result of her experiences she now wants to help normalise hair loss and increase awareness of alopecia.
She says it would have been easier if she had had role models to look up to but that she did not know anyone else with the condition.
This is something she wants to change in her new role as an Alopecia UK ambassador.
She also wants to increase understanding of hair loss in women so it is no longer always associated with cancer.
She says some of her biggest challenges as an alopecia patient have come from not wanting to be pitied by people who have mistakenly thought she is seriously ill.
She added: ‘People living with alopecia can feel helpless - losing the hair that has made them feel beautiful can lead to serious depression, anxiety and trauma, to self-esteem issues and lack of confidence as well as bullying both at school and in the workplace.’
Experts say that hair loss in women is becoming increasingly common.
Dr David Fenton said: ‘Public awareness of hair loss in women has increased, but there is still not enough medical funding and research.’
Joelle added: ‘Hair loss in women has been “covered up” by society, forcing women to hide it more, while it is acceptable for a grown man to be bald.
‘The ultimate goal with all this publicity is to glean as much information about facts and figures, in the hope that more money will be spent on research and ultimately one day, a possible cure.’
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