Katie Hale Alopecia Story.

My name is Katie Hale and I have Alopecia Universalis. My hair loss came on rapidly at the age of 23 and it hasn’t ever come back.

Like most, I found a small circular patch of – well, nothing – on the back of my head on the right side. Having no idea what it was, I just assumed I had burnt my head at some point with my straightener and it fell out. My friend and I even had a good laugh about it and couldn’t stop touching it.

Fast forward a couple of months and I noticed it felt bigger. Then it just started to spread. Within about 2-3 weeks, I had the beginnings of five patches. Within the next seven days, I lost half the hair on my head which was incredibly stressful and traumatic.

I had no other point but to shave most of it off. I tried to salvage a longer patch on the top of my head but that lasted less than three days.

Over the next three months or so I lost the rest of the hair on my body. Fascinatingly, the hair on my right side always went first – my right eyebrow split in the middle, then my left, my right eyelashes fell out, then my left and most of my scalp patches were on the right.

I tried a number of treatments but they all just made me incredibly sick and never really succeeded in triggering hair growth. I couldn’t justify wreaking havoc on my physical health for the sake of some hair, so I made the (incredibly tough) decision to stop.

I was terrified of wigs so I have always rocked the bald look, which comes with its challenges. People often treat you differently and while that can be disheartening and upsetting, I feel like I have an opportunity to make life a bit better for others who look like me. If they stare at me because I’m the first bald girl they’ve seen, then maybe they won’t do it again to someone who isn’t as strong or who might be more self-conscious. Or if someone has hair loss, maybe seeing me go bald might just help give them that little boost of confidence to try it themselves if they want to.

I want people to feel confident to be themselves in and out of wigs so if my experience makes it that little bit better for someone else, then I’m happy and it’s worth it.

That is exactly why I’m so excited to raise awareness through this sponsorship – no one should ever feel like they are held back by their alopecia, but so many are. I want to show people that no matter how scary it is at the start, you can still achieve whatever you want to and do the things that make you happy.

Faye’s Alopecia Story.

Hi I’m Faye, I have had alopecia since I was five years old. This is the same age I started sailing.

During this time, I have experienced small amounts of regrowth but most of the time I haven’t had any hair. Some of the time I have not had eyebrows or eyelashes. It’s really frustrating having things change all the time.

I am now fifteen and the middle of three sisters. I am the only one in the family with alopecia. Most of the time I am OK with it but it is really hard sometimes wishing I had hair. When people first meet me I know that they are wondering why I don’t have hair.

I have sailed for 10 years and competed in four National Championships in the International Optimist and International Cadet classes. I also competed in the Tasmanian Schools Teams Racing competition and last year was invited to participate in the Australian Schools Teams Racing National Title. I have also competed in several SB20 national championship events.

Sailing is a sport in which females and males compete against each other. It requires a lot of preparation and interaction amongst all competitors. When I started competing at interstate regattas, where competitors, officials, and family members did not know about my alopecia it was initially quite difficult. I had to learn that my alopecia would make me feel worse if I missed out on things trying to hide it. My family and I find it a lot easier if we explain my alopecia so other people understand why I am like this, how it does not affect my ability to compete to a high standard, or my enjoyment and participation in activities. I feel like I have raised awareness of alopecia within this sport and will continue to do so. When people see I am comfortable I think it makes them comfortable.

I regularly volunteer with the Sailability program at a nearby yacht club to support disabled people with their weekly sailing. I am also a junior committee member at the Sandy Bay Sailing Club and have recently completed my assistant instructor qualification. I teach and support younger children in learning sailing. My alopecia is sometimes a point of curiosity to younger children. It is something I have to be brave about when they ask questions or notice that about me. Hopefully, when they meet other people with alopecia it will help them to accept them more easily.

I am thankful for the support of AAAF to assist with coaching costs from the Sponsorship. I am training to compete in some important regattas and the sponsorship is assisting me to access more training opportunities.

Michelle Law’s Story.

When I was diagnosed with alopecia areata at age 13, it was a very sudden life shift. I went from having long, thick hair to being bald within a couple of months, which made navigating high school particularly tricky. Developing alopecia at that formative age impacted my identity, and self-esteem, and instilled a lot of anxiety around social activities and sports.  

Now, I’m 32 and my alopecia has shifted and changed over the years, as it tends to do! I’ve had my hair grow back completely, then become sparse and patchy, to then growing back and falling out all over again. The past decade has been more consistent; right now I’m bald and have lost my eyebrows. Along the way I’ve tried many different treatments – from steroids to T-Cell inhibitors – that have been successful to varying degrees. With age, I’ve come to peace with how unpredictable alopecia is, and don’t take any medication for it. 

Having alopecia has definitely influenced my worldview, which in turn has influenced my working life. Personally, it’s taught me to develop a great sense of humour, to remember that beauty is skin deep, and to have greater sympathy for others and their internal struggles. Professionally, it’s inspired speeches about alopecia and TV projects like my SBS series, Homecoming Queens. 

I think having alopecia teaches you to be resilient, adaptive, and fearless. It’s also an ever-evolving journey. There are days when I love having alopecia (drying off after the shower is so easy!), where I miss having hair (winter is freezing!), and sometimes find it utterly exhausting (having to explain what alopecia is to new people). It’s been amazing having more public figures speaking about their alopecia, but there’s still a long way to go.

I’m excited to create more visibility and conversations around alopecia through the AAAF’s sponsorship program. I’ll be undertaking six months of horse-riding lessons, something I’ve always wanted to do. Horse-riding can be such a peaceful yet powerful experience, and horses are such empathetic creatures. I’m looking forward to the new life skills I’ll pick up along the way and can’t wait to keep everyone posted.

Airlie’s Alopecia Story.

When I was four years old I started losing my hair in patches. My mum took me to the Dermatologist and I was told I had Alopecia Areata. I was given some DCP ointment which made the hair grow back.

When I was 8 my hair started falling out again, we went back to the dermatologist and were told to apply the ointment again, but this time I had a severe allergic reaction. We were going into lockdown because of Covid so was told it was too risky to start on an immune suppressant.

During homeschooling, I lost all of my hair everywhere and was told I had Alopecia Universalis. I was so worried about what people would think of me, that I didn’t want to go back to school or dancing. When it was time to go back to school, I got a synthetic wig. It was so itchy and hot.  I was worried about it falling off when I moved around. My teacher helped me create a Youtube video letting the school know all about Alopecia and in it, I said: “I’m not sick, I don’t have cancer, It’s just Airlie, with no hair”.

I started off taking my wig during class time because I was getting too hot and found it hard to concentrate, I then took off my wig during playtime where I wore my school hat instead, and eventually worked up the courage to take the wig off during assembly in front of the whole school! 

I showed the Youtube video to my dance school too, I got the courage to take my wig off during dance classes then at the end of year concert I didn’t wear a wig.

I spent eight months on immune suppressants that made me feel sick and tired and I absolutely hated the blood test at first because I was not used to them, my hair didn’t grow back during the eight months, so I decided to stop the medication as feeling sick was worse than not having hair.

Once everyone knew about my Alopecia, I felt so much better. I am proud of the person I have become, and I no longer care about not having hair as this is the new me!

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.

Christine’s Story (3 months check-in).

Since making exercise a priority I’ve noticed changes in my mental health. I try to exercise most days, and this helps me feel strong physically and mentally, it releases stress and produces endorphins leaving me feeling happier and giving me more energy. When I feel good mentally, I cope with my alopecia better. If I don’t exercise for a few days, I feel tired, flat, and have low self-esteem. Self-deprecating phrases and words enter my mind, and it is hard to ward them away. 

Since commencing regular exercise and making it a daily priority I’ve realised I enjoy a challenge. I often shied away from challenging feelings and circumstances, thinking if I didn’t face these things life might be easier. However, the more I exercise and the stronger I feel, I have greater clarity in my mind allowing me to reframe my thinking about challenges. 

Three months ago I was lucky to be awarded a sponsorship with the Australian Alopecia Areata Foundation (AAAF) and it has helped fund my training and given me an extra boost to dig deep with my commitment to exercise. As a result, two months ago I decided to sign up for my first annual challenge that Mum’s On A Mission (MOAM) hosts. I’ve been a member of MOAM for a few years now, attending their exercise classes regularly. However, I had never previously joined the annual challenges they host due to fear. Fear of failing, fear of letting people down, fear of letting myself down, fear of letting people in, fear of people learning I had alopecia and that they might see and think of me differently. The 8-week challenge this year was aptly named “The Breakthrough” and it certainly lived up to its name. It involved 8 weeks of education sessions on training styles, nutrition, heart rate zones, recovery, and facing your fears. We also had to complete weekly exercise challenges like stair climbs, bolt push-ups, inchworms, frog squats, planks, and splits. All of this is done in teams of 3 people. 

I dedicated the 8 weeks, alongside my teammates, to facing my fears. I faced each week’s challenges, digging deep to learn and understand why I had been fearful of certain things and what might happen if I decided to acknowledge these fears and stand up to them. I’ve cried, I’ve had injuries, I’ve had successes and failures. I made new friendships and I faced my fears. I feel proud and I feel good. Yes, I have alopecia, yes, I wear a wig when I train, yes, I feel self-conscious about it, but that is ok. Vulnerability is ok. And from consciously accepting vulnerability, awareness emerged. And from awareness, I was able to work on building strength and self-acceptance within myself.

I feel grateful to AAAF for providing me with this opportunity to push myself out of my comfort zone. I’ve pushed myself to train more, sign up for the 8-week challenge, and speak about my alopecia. I don’t shout it from the rooftops, but I don’t shy away from it anymore. I welcome questions people have about alopecia and questions about my experience with it. I use it as an opportunity to create awareness of the disease, provide information and clarity on what it means, and share my experience. I am not sick. I’m not sure if my hair will ever grow back. I am ok with having alopecia. Please don’t feel shy about asking me about it because I’m no longer shy about talking about it.

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”

AAAF’s Christmas in July Giveaway

The Australia Alopecia Areata Foundation is celebrating our 10th anniversary in 2020. To celebrate, we have 10 fantastic give away packs for 10 lucky winners.

To enter the giveaway, submit a creative work about alopecia and the theme “ten”.

You could write a letter to yourself 10 years ago, create an artwork with ten colours, a poem with ten lines, ten photographs from your journey with alopecia, write up the ten best things about alopecia or the ten things you wish you’d known. The only limit is your imagination.

Continue reading “AAAF’s Christmas in July Giveaway”

How AAAF Began – 10 Years On

AAAF Launch Photos 2011 Photo 7By Chel, AAAF Founder and President

I am often asked why I wanted to create AAAF ten years ago.

It wasn’t that I wanted to create AAAF; it was more that I saw a need to have a unified body that supported everyone who had some form of Alopecia Areata.  The support group that I had been a member of didn’t align with my ideals of how to get Alopecia Areata known in the wider community. I had the hope that one day there would be unconditional acceptance on someone’s appearance.

My son’s appearance changed dramatically by the time he was two.  Try and think back twenty-one years ago, the comb-over for males was the fashion. So having a toddler with patchy hair did bring on the stares and, yes, the questions.

Continue reading “How AAAF Began – 10 Years On”

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