In March 2018, AAAF ran our first event just for boys with Alopecia Areata – a weekend camp in WA. Hosted by Greg O’Rourke, the WA AAAF Branch Manager, at his holiday home in Eagle Bay, three hours south of Perth, the camp was attended by six boys aged nine to fourteen.
Some of their parents also attended, along with other members of the AAAF team – Support Ambassadors James Miller and Cam O’Rourke and Carlo Napolitano. Carlo and James flew in from Sydney on the Friday evening especially for this camp.
When we moved to Cairns four years ago the last thing on my mind was meeting a group of ladies with alopecia and forming lovely friendships.
I had never intentionally sought out anyone with alopecia before, certainly never while I was in high school, during my toughest years of having to cope with being bald. Before coming to Cairns I had only ever known two other people who had alopecia.
We all met through our gorgeous hairdresser. Angela, from Angel Wigs in Melbourne, treks up to Cairns regularly and offers haircuts, wig fittings and support.
On this particular occasion she asked me if I would mind a couple of ladies coming to my house to have their wigs cut. Time was tight and it would be easier if we could meet all in one place.
I said, ‘Yes’.
What followed was an amazing time of sharing, building friendships, emotional support and a sense of belonging.
Having this beautiful group of ladies has been an immense blessing.
We laugh and talk and are a physical reminder to each other that we are not alone, that there are others who have alopecia, there are others who understand and know what it’s like living with this hard ‘thing’ called alopecia.
We tell each other that we’re beautiful and talk about a day when it won’t matter if we wear our wigs or not because everyone will know that it’s not hair that makes us beautiful.
We laugh at stories– a wig being petted by an unsuspecting relative who mistook it for a cat. We commiserate about the nerve-racking $5000 haircut! We talk about the best place to get eyebrow tattoos or what is the best make-up brand to wear is. It’s Bobbi Brown by the way, shhhhh.
And we share which is the best water bottle to use as a wig stand when we’re travelling and our normal wig stand won’t fit into hand luggage.
Sometimes we have to brave and bold with our alopecia and it really helps to have people who can offer love.
Having this group is like being surrounded with encouragement and support. We can be real and honest with in our struggles, we can discuss our strict diets or nail issues. We empathise and give advice. We celebrate bravery and success and know the weight of worry and anxiety and give hugs when the tears flow.
I have a lovely friend with alopecia who lives in Tasmania. We chat over the phone or message on facebook. We encourage and support each other from opposite ends of Australia.
Our little group here in Cairns is changing. Sondi has moved interstate and I’m heading off overseas for six months. But we’ve made the connections now, we know each other exist and we can keep in touch whether it’s over lunch or over the Internet.
Alopecia intruded on my life unexpectedly and without warning on the day of my youngest son’s cowboy themed 1st birthday party. It’s difficult to forget how I felt when my first bald patch was discovered by my husband; how was I expected to hide this newfound shame while still trying to deliver my son the best birthday imaginable, all the while being dressed in full cowgirl getup. I wasn’t sure what was going on and felt shocked, immediately booking an appointment to see my doctor the next day. My hair has always been big, boofy and there has always been a lot of it – for me to have any type of bald patch was unimaginable.
You’ve probably heard Facebook has changed it’s algorithm again.
You might have seen a screen message from Facebook telling you they’re improving your experience. Facebook say they’re focusing on friends and family. That may be true. But the most recent change in January 2018 is going to hurt the Alopecia Community.
If you haven’t heard about the algorithm, let me provide an intro. In the most basic sense, the algorithm is a calculation which controls what you see in your Facebook feed. It’s kept extremely secret and is very convoluted. It measures things like what types of post you click on from which sources, and how many likes, comments and shares it has, and over 100,000 other factors.
Exactly what The Algorithm prefers is a secret, though the general idea is that the more thumbs up, the better.
365 days ago I was diagnosed with alopecia. Now, from head to toe I am completely bald and that is okay because I am brave.
You could ask a thousand people who suffer from Alopecia what it is like living with it and I can guarantee each and every one of them will give you a different answer. My answer, heart breaking.
My alopecia is something me and my family handled head on with no warning or knowledge and without them I do not think I would have made it this far in my journey. Everything I do and the way I am able to hold myself, I owe to the support my family gave me.
Alopecia is my disease, but it is my families journey.
I’m thirty-five years old and I’ve had alopecia in its various forms all of my life. Yet these past two years have been the healthiest I’ve ever experienced with alopecia.
My idea of healthy alopecia has to do with my whole being.
Healthy on the Outside
When people see me with a scarf on my head—or just my bald head—most immediately jump to the conclusion that I am sick. I’m sure you know what I’m talking about.
So when I’m doing the Red Arrow walk in Cairns or bike riding with my two boys to school I often get surprised looks.
Exercising can be hot, sweaty business and taking off my cap is the fastest way for me to cool down. I’ve found that while I’m chugging up the steep path and stairs on the Red Arrow with my cap on people usually ignore me, they’re in their own little world of music and breathing, and let’s face it, just trying to make it to the top without falling over.
When I take my cap off all of a sudden I see people’s heads lift and faces break into a smile.
People say, “Hey.”
And suddenly there is a connection.
It makes me feel good to know that people see me as a healthy individual. I don’t have hair and yet I’m obviously not sick either.
I have a confession to make. I’m absolutely nuts about New Year’s Resolutions.
I know, I know – January 1st is just a date, there’s no reason to limit introspection to one tiny portion of the year, and yes, I’ve heard that making resolutions might even be bad for keeping them.
I can’t help it. I really like them.
For me, January really does feel like the designated check in. A chance to look back at what’s been achieved and be excited for what’s ahead. To decide what to bring into the new year and what to leave in the past. Truth is, I’m a big of a day dreamer. If I didn’t give myself a designated time to decided what I want to do and plan how we’re going to do it, I’d end up another year down with nothing to show for it.
A year ago today, we posted AAAF’s New Year Resolutions for 2017. We celebrated the amazing things we did in 2016 – like the Bald Canvas Initiative and our Remove GST on Wigs campaign – and we made plans for what was to come.
Looking back on 2017, I feel very proud of our wonderful team, and our outstanding community, because we achieved everything we set out to do. And so, so much more.
I first met my friend Alopecia at the age of 13. She came by herself, one small patch at the back of my head. She was shy, avoided the limelight, hiding behind my long brown locks, disappearing on her own 12 months later. At the age of 15, Alopecia Areata popped in for a visit, in the shape of two small patches, behind both my ears. Again, quite shy and easily disguised, she left on her own 18 months later.
Alopecia Areata is like a strange aunt, the one that calls in unannounced, makes a mess of the place, eventually leaves but you know she’ll be back.