Bren’s Alopecia Story.

Bren is a biologist that has lived most of her life with alopecia. She started losing her hair when she was five years old, all while she was going through a very rough moment with her family, but even when that was over, the hair loss was not. Bren tells us a bit about her journey; wigs, revealing her hair loss to coworkers, love, acceptance, and more.

This is Bren’s alopecia story.

Victoria Gandera’s story and sponsorship.

When my Mum first told me that I had gotten the scholarship for my music learning I was so happy, and I was filled with excitement. This scholarship really helped me with my music learning this year because now I can do my singing exam for grades 3 and 4.

In the year 2020, during the first months of the pandemic, I started learning to sing and that was when I had my first Zoom lessons. When I sing, I can relax, and I feel like I don’t need to stress about anything and everything.

I really enjoy singing because I can increase my skills and my techniques to get better and better. I really love singing and I put in a lot of practice to get good at this skill. When I look back at videos of me singing my first ever song I’ve learned, I feel like I have improved so much since then and that all my skills and techniques that I have kept in mind, have helped me get my singing to be much better and well. I am so glad I have gotten that scholarship. My life wouldn’t be the same without music and singing.

The only reason I can do the two grades is the money from the scholarship, which has helped me with my lessons and has made it so that I could learn so much more. When I sing, I can just enjoy the moment.

My mum recorded my performance at the recital, which was organised really quickly. We have helped to prepare to program with the AAAF logo on it and we did those cute tickets, that said that everyone was VIP at our recital. It was the best day and even though I was a bit anxious at the beginning, I enjoyed it a lot.

Just like Victoria, we support many others through their journeys and we help them achieve their dreams. You can find more details about our sponsorships all through our webpage and social media.

Emma’s Alopecia Story

Hi, my name is Emma, and I was diagnosed with Alopecia Areata just before my 14th birthday.

My hair had always been perfect until one morning I woke up and got in the car to drive to school and mum asked me what I had done with my hair. At this stage, it was no more than about 5mm of hair missing from the front of my hairline. The next day it was even bigger, about the size of a 20-cent coin. This is when we decided to book an appointment with the dermatologists. We were extremely lucky, and it turned out they had a cancelation that week.

It was 5 days after the initial piece of hair fell out when I was diagnosed with Alopecia Areata. By this point, I had already lost about a 1/8th of my hair.

We instantly started steroid injections into my scalp, and they started to work. Over the course of about two weeks, I continued to lose hair rapidly until over a quarter of my head was bald and my hair had thinned drastically. At this point, we were told that I was most likely going to lose all my hair and that we should start looking into wigs.

One week later, I shaved what was left of my hair and donated it to help others with alopecia.

My hair loss slowed right down, and it eventually stopped. After a few months, I had some hair regrowth on my head. When things finally looked like they were getting better I suddenly lost all my eyebrows over a period of 3 days. This was exceptionally traumatic. We turned to henna to create the illusions of eyebrows for a few months before they eventually began to grow back. While I still have bald patches on both my head and my eyebrows, I have hope that one day they might grow back.

Emma is a very talented dancer that has been training for most of her life. She also is one of our recipients of the AAAF gold level Sponsorship Program which has allowed her to pursue her dancing. For more information about the sponsorship program click here.

Alex’s Sponsorship Update 2

My Bridgeneering lessons are finished and it was really really super great.  There was nothing about it that I didn’t like – the whole thing was the best.  If I could make one of the bridges in real life, I would make the Tower Bridge.  It’s a bascule and suspension bridge.  That means it has parts that go up and down like a drawbridge.  I also made the Story Bridge that’s a cantilever bridge; the Sydney Harbour Bridge which is an arch bridge; and a beam bridge.  I think the bridge we go over to Redcliffe is a beam bridge – it’s long and flat.

For the beam bridge, it was so long it went from one wall of the classroom to the other and the whole class worked on it together.  For the other bridges, we worked in pairs.  Everyone there was really kind and funny and everyone just love building bridges so we all worked really well together.  We all liked the same things as each other so everyone got on really well.

My favourite person was the teacher, Justin.  He knows so many interesting things and I just love learning from him.

When I grow up I want to design and build bridges but I also want to do all the other types of engineering too!  Thanks AAAF for sending me to Bridgeneering!

Ten Years In

Happy Alopecia Areata Awareness Week! AAAF is so excited to be celebrating our tenth Awareness Week with this amazing community.

This year has brought a lot of reflection and introspection. For AAAF, celebrating our tenth birthday has been very different to how we envisioned. We’ve changed plans, boosted our remote and online support, and had to pause many of our usual events and fundraising activities. Many states have been lucky enough to be able to celebrate Alopecia Areata Awareness Week in person, while others have joined remotely.

These changes, coupled with our tenth birthday, have really brought home how much has changed for AAAF and for our amazing community since we started.

When AAAF first began, the most common question we were asked was “Am I the only person with this condition?”. We consider it one of the greatest signs of success that we no longer hear this.

Continue reading “Ten Years In”

A letter to my alopecia family

Submitted by Siarrah – You can read more about Siarrah’s journey with Alopecia Areata here.

My Alopecia journey in the last year:

Through the AAAF sponsorship program I set myself a goal to create awareness within my netball community.

I forget that I’m wearing a bandana; I forget that others might wonder why.

With the sponsorship program I found myself committed to creating awareness.

Continue reading “A letter to my alopecia family”

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.

Continue reading “Finding Balance 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”

“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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