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!

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!

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 😊

Alopecia and the New School Year

Happy new year! A new school year is just around the corner. Many families will be prepping for the usual concerns – being sure to have the right books, enough pens, and shoes sturdy enough to (hopefully) make it through the whole year.

For families living with alopecia, the new school year can have some extra considerations. Whether you’ve had alopecia for years, or have experienced hair loss over the holidays; whether you’re heading into a new year at the same school or have made a big transition, we hope this article can be a helpful guide. The new school year doesn’t have to be stressful, and there is a lot you can do to set up for a good term.

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Summer Reading List from Love, Alopecia

Summer is here. Can you hear it? It’s the sound of a deckchair, hammock or cozy couch calling your name. All you need it some ice tea and a good book.

This reading list isn’t about the newest releases or best sellers, but a collection of books which speak to us and share something meaningful about the experience of alopecia.

Do you have a book that helped you on your hair loss journey? Share it in the comments!

Continue reading “Summer Reading List from Love, Alopecia”

Alopecia Video Resources

AAAF have a huge range of information and resources available on our website, including latest research updates, support material, and our biannual newsletter. This blog is also home to some fantastic tips, tricks and techniques to help you on your alopecia journey under our “Advice” tab.

But did you know that AAAF have a YouTube channel with hours of video resources all about living with a form of Alopecia Areata? Whether you’re looking for a super quick animated explanation of how Alopecia Areata works, a detailed makeup tutorial, or discussion of how to tell your friends about the condition, we have great video resources that can help.

We’ve collected some of the most popular videos to share with you here. What kinds of videos would you like to see us do next? let us know in the comments!

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My Alopecia Story – by Eva

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I was only 8 years old when my hair started to fall.  My beautiful long brown hair was soon covering the bathroom floor.  I refused to brush it or wash it in the hope that it would stay on my head.

It was only a month before most of it was gone, and I was diagnosed with Alopecia Areata.  A course of steroids had it growing back, but once the steroids stopped, I lost all my hair including eyebrows and eyelashes.  I tried wearing a wig, but that didn’t last long.  It made me hot and uncomfortable.  It took a couple of years, but I eventually built resilience and wore nothing on my head.  It was difficult at first, but once I explained to everyone at school what Alopecia was everybody accepted it, and accepted me.

Continue reading “My Alopecia Story – by Eva”

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