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.

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!

Corinne’s Alopecia Story.

My name is Corinne Scullie, I am 37 years old and I am currently suffering from Alopecia Universalis.

My journey with alopecia began when I was in primary school and I started losing patches of my hair. Alopecia was something my mum already had experienced herself so we knew what it was straight away. I recall trying different things at the time to try and help but eventually it all fell out. The biggest thing I remember about this time was that most people assumed I had cancer and that not many people knew what alopecia was.

At school I was allowed to wear whatever hats I wanted inside the classroom as well as outside and I thought this was awesome because everyone else had to wear the dorky school hats. During this time, I continued to play Netball and participated in Calisthenics. My hair grew back quite quickly and over this period I never wore any wigs.

Since then I would get the occasional patch over the years but it wasn’t until 2014 that it really started to disappear again. This time, I lost all my hair and eventually my eyebrows, eyelashes and body hair disappeared too. Because alopecia was something I had grown up with (my mum continued to have it come and go over the years and one of my younger sisters also lost her hair) I found it a lot easier to accept than most.

I started buying wigs and named my first one ‘Big Red’ (because it was a long red wig) and we had a lot of fun together. I have never shied away from the fact that I have alopecia but once my kids got to a certain age, I had to begin to factor in their comfort levels as well as my own. Slowly, their friends became aware. My son, in particular, found it funny to pull my wig off and say “my Mum’s bald!”.

Given I have a bit of a collection of different wigs, it also has become fun for kids (and sometimes the adults) to try them on. When explaining to younger kids I often say I have magic hair that can come off and go back on – sometimes it changes colour too. Its quite funny to then see them try and take their hair off too.

After several years of attending my daughter’s calisthenics competitions and concerts I started to want to get involved again myself. She was around 6 at this time and wasn’t keen for me to join and I think part of this was the fact that I would be on stage in front of people without hair. I gave her another year before raising the subject again and she was not thrilled, but my husband made her come around to the idea.

Joining the Masters team of Bendigo Calisthenics Club has been the best for my self-confidence. I have made new friends and helped spread some awareness within the club about Alopecia. Receiving this funding grant has allowed me to continue this year and will also give me a platform to spread further awareness throughout the calisthenics community.

Thanks to the Australian Alopecia Areata Foundation (AAAF), for funding my return to Calisthenics and for helping me spread awareness about Alopecia!

Emma’s Alopecia Story.

My name is Kylie and I am Emma’s Mum. Emma was diagnosed with Alopecia during the first lockdown in SA, in March 2019.

It all started with some of Emma’s hair on her head falling out in big patches.  Then it slowly progressed to her eyebrows, eyelashes, and all of her hair on her head, arms and legs.

We had trouble getting Emma into seeing a specialist and dermatologist at the time of the hair loss due to the COVID 19 outbreak and many doctors were not taking patients from the Barossa which is where we live, due to the cluster in Tanunda (the tourists from the American Cruise Ship).

When Emma returned to school after the COVID lockdown, she had lost a lot of her hair and wanted to wear a hat to school.  I emailed all of Emma’s school friends to advise them of the situation and to let them know Emma may look a bit different and all her friends wore a hat or beanie to Emma’s first day back at school.

Emma is a resilient and strong girl and has handled what life has thrown at her health wise with strength and dignity.  She amazes me every day and I feel privileged to be her Mum.

The funding we have received from the foundation has been amazing and has helped Emma continue her passion for Gymnastics.   This activity gives her so much confidence and he shas progressed to the Performance Team in her gymnastics group and continues to improve and practices daily at home.

We would like to thank the Australian Alopecia Areata Foundation (AAAF) for helping and sponsoring Emma 😊

My Alopecia Journey – Kerri

Kerri was one of the recipients of the AAAF Sponsorship program which ran in 2019 and early 2020. She is a talented artist who put together a special exhibition about her journey with this condition titled Understanding Alopecia.

I went through a very stressful time 6 months before my hair started falling out, I never thought anything of it and kept on with life as you do. I did have a bit of hair loss, but I never really took much notice until I went to get my hair cut one day and the hair dresser told me she had found two round patches on the back of my head about the size of a twenty and ten cent piece. She suggested that I go to the doctor and said it could be alopecia, I had never heard of Alopecia before so this started a strong relationship with google researching Alopecia. This period of time was the worse as I didn’t really know what was wrong with me, the unknown and thinking it could be something worse was worrying.

Continue reading “My Alopecia Journey – Kerri”

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