Maddi’s alopecia journey

“I was 13, and it just started off as small, round patches,” she said.

“My local hairdresser at the time picked it up and recommending going to see a GP to get a referral to a specialist.

“Probably within three to six months I lost all of the hair on my head.”

Often misunderstood or unknown, alopecia areata is an autoimmune disease that causes hair loss, from small patches to all hair on the body.

Around two per cent of people will be affected by alopeica areata, commonly presenting in childhood or adolescence, as was the case with Maddi, who, before her diagnosis, was largely unaware of the condition.

“I’d never really heard of it, I thought I would just get treatment and it would grow back straight away,” she said.

“Those first 12 months I would wear a beanie or a headscarf, then I got a wig.”

Maddi felt supported during this time by her community in Rochester, including while at school.

As an adult, her confidence as she navigates the world with the condition has continued to build.

She has lived in Geraldton in Western Australia and in London, recently returning to Rochy where her friends and family are.

“Growing up in Rochy I had a really close friendship circle,” she said.

“I was always really supported, there was never any bullying. The school was really good, I played netball, did dancing, swimming.

“That’s always been a challenge, meeting new people and telling people, whether that’s starting a new netball team, dating, starting a new job.

“Since about 2020, I’ve been comfortable not wearing my hair, like when I go for a walk or a run.”

Maddi has volunteered with the Australia Alopecia Areata Foundation for the past few years, heading to the annual camps held for children aged six to 18 living with alopecia.

The 2024 edition is Maddi’s third time volunteering at the AAAdventure Camp, with all costs covered by AAAF.

“It’s a weekend where the kids can be themselves and be around other kids going through the same thing,” she said.

“It’s so interesting to see how all the kids deal with it so differently.

“One of them said to me something about it being the best weekend ever because they could be completely themselves. It was really beautiful.”

The camps have also given her an opportunity to make friends with adults living with alopecia who also volunteer with the foundation.

This has been particularly valuable to her, as growing up she was not connected with a community of those with the condition.

AAAF also funds kids’ activities and a ‘Grant a Wig’ program.

For resources for those living with alopecia, or to learn more about the foundation and donate, head to aaaf.org.au

There is also a strong community online, with Facebook groups and support networks for those with alopecia.