Announcing Kokoda18

In August 2017, two amazing members of our community, Greg and Tracey, headed to Papua New Guinea to tackle the famous Kokoda Track. This gruelling seven day journey took them through 98km of beautiful and harsh tropical landscape and profound history, as they followed in the footsteps of the ANZACs.

Kokoda17 aimed to champion awareness of Alopecia Areata and to raise much needed funds towards research into this condition. The team raised over $12,000 to support individuals and families whose lives have been changed by Alopecia Areata.

In March 2018, a second team is taking up this challenge, and you’re invited too! Kokoda18 is now recruiting!

Andy, whose wife Amanda has Alopecia Areata, is tackling the Kokoda Trail in March 2018 and we’re looking to recruit fearless adventurers to join him on this journey of a lifetime.

If pushing your boundaries to help support people in need sounds like a challenge you’d be winning to champion, get in touch with us at greg@aaaf.org.au to find out more about being part of the Kokoda18 team. 

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Raising Kids with Alopecia (from ex-kid with Alopecia)

 When young kids and teenagers first develop Alopecia Areata, it affects the entire family.
 
It’s usually a highly emotional, stressful and even scary time. There are so many unknowns with this condition. Why does it happen? How it might develop? Will treatments even work?
 
That’s why AAAF exists. I’ve volunteered with AAAF for most of my adult life. First as a Youth Ambassador, then Support Ambassador and currently as Secretary. I’ve spoken with dozens of parents and kids trying to come to grips with this new diagnoses. Though their experiences are diverse, they’re all asking the same question: What do we do now?
 
A disclaimer before I get started:
I’ve never been a parent and I’ve never raised a child, alopecian or otherwise. I still don’t feel like a grown up. My Peter Pan Syndrome to get stronger every year. But I have had alopecia myself since I was very small and have gone through almost every form since.
 
I can’t tell you what it feels like to raise a kid that’s going through this. But I do know what it’s to be a kid trying to understand AA and what it will mean for my life. If you’re going through something similar, then it’s my hope that these four pieces of advice can help.
 
-Georgia, AAAF Secretary
1. Keep Calm.

Continue reading “Raising Kids with Alopecia (from ex-kid with Alopecia)”

Beating the Heat while living with Alopecia: The Tropical Challenge

alopecia-and-hot-weather-author-linseyBy Linsey

Living in the tropics and coping with alopecia has been an interesting challenge for me.

I grew up in Indonesia practically on the equator. It was hot, sticky and 100% humidity. When I first got a wig I still had quite a lot of hair on my head— hair that I was not ready to give up on or shave off. I was thirteen and I didn’t want anyone to know I was going bald. I was so ashamed. So I wore my wig on top of my hair, sometimes even to bed. I broke out into heat rash on my head and my face. My skin was not happy and neither was I.

Continue reading “Beating the Heat while living with Alopecia: The Tropical Challenge”

Alopecia as a Fashion Statement

By Gemma

I know what you’re thinking, how can losing my hair (and in my case eyebrows and eyelashes) ever be considered a fashion statement? Young girls are constantly bombarded every day with pictures and videos of women with long flowing effortless-yet-this-actually-took-3hrs-and-20-products-to-do hair, and I could never imagine celebrities like Taylor Swift or Selena Gomez without their iconic hat-rack toppers. Having beautiful hair seems to be one of the biggest fashion accessories in Hollywood, and people without it tend to be looked down on. Hey, look how people talked about Britney Spears’ epic head shaving incident of 2007! Even men are told they must have perfect hair and growing up with my little brother; it seems they take longer than the girls to get their hair ready.

gemma3

So in a world where the ideal hair-do can be narrowed down to a handful styles, how does having no head hair compete with that? Continue reading “Alopecia as a Fashion Statement”

“Alopecian” – A Language Guide

ALOPECIAN
[Pronunciation: al-uh-pee-shee-an]

Noun (Informal): A person who has a form of the hair loss condition known as Alopecia or Alopecia Areata.

Plural: Alopecians

Examples:

  • Alopecian women and girls often have a very different experience with the condition than men and boys, but the common assumption that alopecia is ‘easier’ for males is incorrect.
  • Having been an alopecian for most of my life, I have a very different experience in crowded, public spaces than people who do not have such a visible difference.
  • As an alopecian, I loathe being called an alopecia sufferer.

Continue reading ““Alopecian” – A Language Guide”

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