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.
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.
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.
As you may be aware, earlier this year AAAF was able to send two of our team as representatives to the National Alopecia Areata Foundation Annual Conference in Miami, Florida.
We’ve been able to bring back some fantastic ideas for new projects to bring our community here in Australia, some great information from the Ask the Experts session (find it here), and now are excited to be able to share from a session on a young adults perspectives on living with alopecia.
This session was hosted by an amazing panel of individuals in their early 20’s who have lived with alopecia through their childhood and teens. Individuals in the audience, most of them parents of kids with alopecia themselves, were able to ask questions and seek information based on the panels personal experience.
It was fantastic to see this exchange of information and perspective, but it was also really amazing how many of the questions that were asked were the same as those we receive daily at AAAF. In order to bring the amazing experience of being at the conference with over 600 other people with alopecia, we’ve taken extensive notes from this expert panel to bring to you.
Before we begin, there is one thing I want to make absolutely clear: This article isn’t about help you lower stress levels in order to start hair regrowth. It’s about lowering stress levels in order to live happier and healthier.
Alopecia Areata is not caused by stress.
Reducing stress is not a cure for Alopecia Areata. Though some people find that their hair loss seems to be related to their long term mental and emotional states, research into this aspect has found little consistent data. Reducing stress does however assist in overall health improvement, and has been found to assist cardiovascular health, digestion, immune function and even skin appearance. The improvement to mood, sleep patterns, over all productivity and happiness also demonstrate the reducing and managing stress can be a vital step in an overall healthy lifestyle.
Twenty years ago my journey with Alopecia Areata started. My son, then 20 months old, had a chicken pox that rested at the hairline on his forehead. Within days his hair had fallen out and was starting to receded down the center of his scalp.
With no knowledge of the cause and no visible sign of hair regrowth, off we went to the dermatologist.
On inspecting my son, the conclusion was Alopecia Areata. After the general questions probing what that meant, came the question from me “so how do we treat this”.