Faye’s Story and Healthy Alopecia

Faye Read with friendBy Faye, age 11

Alopecia is not the easiest thing in the world and for a while, I didn’t believe that it was possible to do all the things I did before my alopecia came back when I was in year four. But after a while, I came to the realisation that I was missing out on things because I was avoiding all the questions and the stares. Now I am back into everything and am joining in with sports and other activities with my friends.

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Life with Alopecia – Pat’s Story

PatMy alopecia story began in 1989 when I was 39 years old. I experienced a tremendous shock that was to last some years. Not long after this, my first small patch of hair disappeared from the top of my head. Although I was preoccupied with bigger concerns, I was a little worried and the doctor sent me to a dermatologist who also seemed rather unconcerned. His exact words were “oh people are walking around like this all the time” like it was no big deal.  Yet the patches of hair loss became larger and the cortisone injections into my scalp only regrew sparse white hairs of a totally different texture to my own. In time I stopped having the painful injections and decided instead to get a wig.

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WA Boys Weekend Recap

Eagle Bay Boys Weekend 16-18 March

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.

(Left to Right: Greg, James, Cam, Carlo)

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.

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Alopecia Community

By Linsey Painter

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.

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What Healthy Alopecia means to me

By Rachel

Rachel (3)
My son’s 1st birthday party – trying to keep a smile on my face despite finding my bald patch that morning

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.

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Is Facebook hurting the Alopecia Community?

By Georgia (AAAF Secretary)

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.

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365 Days of Bravery. 

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.

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Finding Balance with Alopecia

By Linsey Painter

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 OutsideLinsey HA (1)

 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.

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