GROUPS of Australian children, aged 6 to 18, recently attended camps around the country where they did many things for the very first time.
Things including uncovering their heads in public, seeing themselves represented, speaking about their bodies and interacting with people like them.
Activities many might take for granted, but for the kids at camp, all of whom suffer hair loss due to alopecia, these experiences and the awareness they help spread afterwards can be life changing.
Run by the Australia Alopecia Areata Foundation (AAAF), these away from home events for kids with alopecia, are just one of the many activities taking place every year for Alopecia Awareness Week.
For the uninitiated, alopecia is an autoimmune disease that affects hair growth across the entire body, resulting in chronic hair loss and baldness.
Although it may present at any point in a person’s life, alopecia often first occurs during early childhood.
As it stands, there is currently no effective treatment or cure for the disease.
Despite effecting 2 per cent of the population, over 600,000 people in Australia, Chel Campbell, president and treasurer of the AAAF, describes alopecia as a “forgotten disease”.
People with alopecia for example are often mistaken as having cancer.
“For those who have little children with alopecia especially it’s amazing how many times you get pulled up by someone who says: ‘I’m really sorry your child has leukaemia’,” Ms Campbell said.
Incidents like these represent part of the societal stigma experienced by many with the condition.
Such stigma may then lead to a lack of confidence, feelings of isolation and difference, and anxiety in both adults and children who have alopecia.
This is despite the fact that apart from increased susceptibility to conditions like conjunctivitis and dermatitis, people living with alopecia are, in fact, rather normal and just as healthy as the next person.
During Alopecia Awareness Week programs run by AAAF like Boldest Bald Brunch, Crazy Hair Day, and the Variety Alopecia Areata Adventure Camp work to counter stigma and lack of information.
Jessica Farley, AAAF’s Tasmanian branch manager and Adventure Camp organiser said there is often very little community awareness about the disease.
“I think every opportunity that we take through the AAAF is an opportunity to educate someone that didn’t know what alopecia was prior,” Ms Farley said.
For many children at camp it will be the first time they have met someone else with the disease.
This allows them a unique space to learn about themselves; to connect, to be open and to build confidence.
“The conversations that take place at camp are conversations that kids may not necessarily feel otherwise comfortable having,” Ms Farley said.
“I think that they can help to build some resilience, but also helps to build confidence and to let these children know that they’re not alone.”
With this newfound confidence, many of the kids feel empowered to step outside their comfort zone in their everyday lives and begin spreading awareness and information beyond Awareness Week.
“Once they’ve gone back into their community, kids feel empowered that they can tell their friends, their family, their teachers, about their condition,” Ms Campbell said.
“It really does make a huge impact to their lives and their wellbeing.”
Alopecia Awareness Week runs in the third week of November every year and this year runs from November 13 to November 21.
Charlie Goldberg is a Media & Communications and Gender Studies double major studying at The University of Melbourne. She is interested in radical and systematic approaches to harmful structures and seeks to carry these sensibilities over to her writing. In her spare time she enjoys queer literature and spending too much time on social media.