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!

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.

“I was able to box my problems away.” Alessandro’s Alopecia Story

What is Alopecia?

Well it is something that I never knew about until 2019.

After my Nonno passed away my mum was hugging me and noticed a bald patch at the back of my head after I had a haircut. She thought that the hairdresser couldn’t cut hair and we didn’t think anything of it. A few weeks later, my parents noticed another small patch on my head.

So, my mum and I went to a doctor. The doctor said there was nothing to worry about and gave me an ointment. It was working for a bit then more bald patches started to appear. We decided to go to a dermatologist who prescribed new medication which did nothing except make me look real fat.

My mum found a group on Facebook and we discovered that I wasn’t alone. We found another doctor who put us on another medicine but it was ruining my liver so I was told to stop it. My Nonna always prayed and we decided to stop taking any medicines.

Every day I lost more and more hair. My mum got some natural medicines which made small hairs grow. I was bald and it was really tough. But I was a little lucky because we were in lockdown so I didn’t have to see anyone. I always wore my beanie and even when it was really hot I couldn’t take it off. It was like my security blanket. I felt everyone was looking at me and it made me feel really sad. I had some really good friends when we came out of lockdown but it was hard. I decided to let people know about alopecia and my primary school did an Alopecia Day where I made a presentation to show the school. It was hard but it meant people knew exactly what was happening to me. 

We stopped all medication but I wanted to see if my hair would grow back and my mum found a new doctor. She recommended a new medicine but I didn’t have any hope. However, a few months later I had patches of hair growing and my eyebrows grew back. I started high school this year and I found out there was another boy that has alopecia too. When I talk to people, it surprises us as they all know someone that has alopecia. My doctor told me that even though my hair has grown back I still have alopecia.

It was tough but what got me through was doing boxing.

We had to stop it but now that I have the sponsorship from AAAF I will be able to continue training and doing boxing sessions with Brooklyn Fitness Club. This has given me confidence and allowed me to box my troubles away. I also have more confidence in talking to people about alopecia and I think it is because I went to the AAAF camp and met people who are like me.

The support I have received from AAAF has been great and I cant wait for the camp this year.

Then we went to a new doctor, and he said to stop all medicine to see if any of my hair will grow back, some small hairs came back. We changed doctors again and she recommended a medicine that has an 80% of your hair growing back. A few months later in January 2022, my hair was fully restored.

Kyla’s Story

Kyla is a 13-year-old who has been living with Alopecia areata since 2020. Here is her story.

“I was diagnosed with Alopecia areata when I was 11 and I am now currently 13 years old.

It all started when my sister Lorelai was playing with my hair at my grandma’s house. The next week my mum took me to the doctor, and I was diagnosed with Alopecia areata.

By the end of March 2020 all my hair had fallen out except for a bit at the back that looked like a bald mullet. I then decided to shave off what was left, and I was a lot happier than I had been since hair started falling out. I was also very lucky that my mum decided to shave her head with me.

Over the next few months my hair grew back. At the end of June 2020, I received my first Bravery Buddy and I named her Desiree after my dancing teacher, who is very special to me. I was the first person with alopecia to receive a Bravery Buddy.

In September, I decided that I would like to get a wig. I then met Martine from Freedom Wigs (Martine also suffers from alopecia), and we organized a wig to be made for me. One of the reasons I wanted a wig was for my school photos. Unfortunately, my wig took a while to be made because it was made to my head shape, so we bought a cheaper, synthetic hair wig which I wore once and that was for school photos. My wig cost $5000 so we applied for a grant from Variety. One of the ironic things about my alopecia journey is that in late November 2019, I donated my hair to Variety’s Heart with Hair program. So, I was basically asking them – could I have my hair back. 

Kyla with her wig

Because my wig was made to my head shape, I had to shave all my hair that was growing back so my head could be scanned for the wig cap. A few days before I shaved it all off my hair started falling out again, so it felt like I was making the right decision.

In mid-October I was made the first Bravery Buddies ambassador by Tegan, who runs Bravery Buddies, and Bravery Buddies was opened to kids with alopecia because of me. My wig arrived in time for my year 6 formal and I was so relieved it arrived in time. One of my friends thought that it was my real hair even though they saw me in class the day before with nothing on my head.

In 2021, I started year 7. For the first couple of weeks, I wore my scarf but then I started wearing my wig once a week or more. If people asked questions about my scarf, I’d just tell them that I had alopecia, I’m not sick and it’s not contagious.

Year 7 was going good until about mid-June when my eyebrows started falling out. The same week that this happened I competed at a dance eisteddfod and danced bald for the first time and I came in 2nd and 1st. Then during lockdown my eyelashes started falling out.

I’m now currently in year 8 and this is my alopecia journey so far.”

Kyla with and without her wig

Thank you for sharing your story with us, Kyla!

“There is no handbook on this.” Hear Chrissy’s Story

Meet Chrissy! 

Chrissy recently shared her story with us about living with Alopecia Areata for 30 years. She shares openly and honestly about what the journey has looked like for her – and what it might be like for others, too. Read it below!

“I first noticed my Alopecia Areata about 30 years ago.  I was living and working on an island on the Great Barrier Reef at the time.  I had really long hair, and they used to call me “Leilani” because of my curly long hair and the frangipanis I used to wear behind my ear.

My alopecia didn’t worry me much back then, and I ended up living on the islands for about 10 years.

Fast forward to around 2002, and my Alopecia Areata turned into Alopecia Universalis within a short period of time.

So there begins the journey that many of us have taken. 

With complete hair loss comes the exploration of tools to get us through whatever we need.  Synthetic wigs, eyebrow and eyeliner cosmetic tattooing, human hair wigs, beanies, scarves, hats.  Most importantly supportive family and friends.  I dipped my toes in all of these pools.  I wear human hair wigs (Freedom wigs) most of the time so that I can blend into society without always having to be the centre of attention.  When I have my hair-free holidays (giving my wig the day off), I usually wear beautiful scarves and soft bamboo caps with lovely big earrings and clothes that make me feel good, or other times a funky hat or fluffy beanie.

I must admit, I still get butterflies in my tummy leaving my “girl” at home.  I feel very vulnerable and it’s not something I’m 100% into yet, but everyone’s journey is a little different.  What I do know is that it’s a very personal experience of growth and confidence in yourself.  Everyone embraces their alopecia at a different pace.  There is no handbook on this.  No right or wrong … no “do this or do that”.

All we can do is share our tips and tools and see if it helps someone become more comfortable in their own skin.  I wish that I had met someone with alopecia when I was first experiencing total hair loss.  Everything that I have now in my arsenal of confidence I’ve stumbled onto myself.  The soft bamboo caps that I wear under my lovely scarves used to cost me $35 each.  I’ve now sourced lovely soft cotton ones on eBay for around $5.  And op shops are a fantastic source for gorgeous scarves.  I’ve found some gorgeous ones for $2 each.

And I really love wearing my beanies… they’re super soft and I have them in all sorts of colours to suit what I’m wearing.  I started making them when I was living and working in Tasmania, and I travelled around Australia for about 2 years (driving a 1986 Toyota Corolla hatchback – hilarious!) and I made them as I went, stopping at little markets along the way to sell them to get some money for petrol, food and camping fees.  It was an amazing experience.

I mostly wear my beanies in Winter, and especially in bed, because as much as you can put lots of blankets on in Winter, your head still sticks out the top and gets so cold – no hair for insulation.  And beanies can be an amazing fashion accessory – not just a head warmer.

I love sharing my beanies with friends, and also with those going through chemo.  My beanies are lovely and soft, and aren’t at all scratchy on those sensitive beautiful bald scalps.  It’s like a hug for your head 😊 and it gives you those warm fuzzies.”

Do you love beanies too? 

We invite you to join us for the Alice Springs Beanie Festival,
Friday, June 24, 2022 – Monday June 27, 2022!
 
The Festival is a community-based event that brings Aboriginal and non-Aboriginal artists together to share their cultures and promote handmade textile arts. 
 
AAAF is sponsoring people to take a trip and attend the festival!

To find out information about how you can be sponsored by AAAF to go to the Beanie Festival, email sheridan@aaaf.org.au.

Join Chrissy and other members of the AAAF community and apply for a trip to the Beanie Festival!

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.

Walk in my shoes, by Jo.

The word “alopecia” means hair loss. Alopecia Areata is an auto-immune disease that results in hair loss on the scalp and elsewhere on the body. It can range from small, individual smooth patches of hair loss, to total loss of all hair on the body – including ear and nose hair. Alopecia Areata is not uncommon, and current estimates suggest that 2% of the population will be affected by the condition at some point in their lifetime1. Alopecia Areata can be a lifelong condition, and can deeply affect self-image, self-esteem, confidence, and even mental health. But there is hope. Jo shares her personal and moving story.

EARLY DAYS

One day at work in July 2019, a friend asked me if I had burnt my hair with my hair straightener. She noticed a small 20 cent sized patch of missing hair. I had never noticed it. I saw my GP who referred me to a dermatologist who diagnosed me with Alopecia Areata (AA). Alopecia was definitely something I had heard of. I always assumed Alopecia was the complete loss of hair and not small circle patches.

Rapidly, that 1 small patch transformed into an AA ophiasis pattern (a unique pattern of hair loss, where the hair around the entire outside of my head fell out). Losing my hair and identity was incredibly traumatising and upsetting. I had no history of AA and prided myself on how fit, active and healthy I was. As I have now learned, AA is an autoimmune condition and can impact you at any age and health status.

Despite being a very confident person, I only told my partner, parents, and brother about my condition. I was embarrassed, fearful, and sad that I no longer looked like ‘me’ anymore. The one blessing of COVID-19 was I didn’t have to leave home and answer people’s questions about my hair.

THE BREAKTHROUGH

AA is a hard illness to sit within yourself. There is no cure and not all treatments work for everyone. Unfortunately for me, AA ophiasis pattern is very rare and also very resistant to treatment.

I feel very lucky to have a family who works in the medical field so discussing treatment options and medication came naturally. I joined AAAF (Australia Alopecia Areata Foundation) for support, read medical journal articles on new treatments, spoke to my medical team, and joined other support networks.

As a psychologist, the strategies I ask my clients to use, I had to apply to myself included deep breathing, mindfulness, grounding, self-acceptance, and rejection of traditional beauty standards. I am grateful that I know my partner and family love me no matter what. I feel that having their support also helped me to be brave. There were lots of nights I laid awake feeling anxious and wondering “what if I lose all my hair?” “what if I am like this forever?”.

After 2 years of treatment which included- painful injections, an intense steroid medication, and very expensive autoimmune suppressant medication, I have had some hair re-growth. In April 2021, I relapsed and some new patches formed with incredibly rapid hair loss.

I also started wearing wigs which was another journey in itself. The anxiety of “what if people notice I am wearing a wig and ask me about it?” is huge and one I still have not faced. Other than my family, I have told no one I wear a wig. I still haven’t come to terms with that in myself.

In this picture of me, I was in “remission” and only had small patches easy to cover with my long hair sections. Flares and recurrence can happen at any time, so this disease never leaves me completely and I need to manage my way through the ups and downs.

REFERENCE

AND TODAY

The financial burden I have carried from multiple treatments, expensive medication, and wigs (none is subsidised) is approximately $15,000 to date. I was fortunate that I have good health literacy, family support, and financial stability to try to fight my AA.

Today I have done a lot of work to accept AA in myself and what it means for me moving forwards. In the morning I take my medication, put my wig on and go about my day as a psychologist. I have to see my dermatologist regularly to manage my hair loss. I often remind myself that AA is not my fault and I did not choose this. I have made peace with my condition and know my worth is not defined by my hair or lack thereof.

1. Australia Alopecia Areata Foundation. About Alopecia Areata. About Alopecia Areata | Australia Alopecia Areata Foundation (aaaf.org.au). Accessed 20/01/2022

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!

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