Piper’s Alopecia Story.

I was diagnosed with alopecia at 7 and a half during a pandemic lockdown. This meant we couldn’t see doctors in person immediately, but we got there eventually. 

My hair started to go in a couple of little patches on the back of my head but then I started to lose it on the top of my head too. My hairline is getting higher and higher and the hair that is left is thin and still going day by day. I don’t have eyelashes or eyebrows and no hair on my arms or legs! My skin is super soft though! 

Seeing my hair suddenly start falling out was a shock at first but at the same time I was still healthy, and my parents told me that none of this was my fault. 

People describe me as a Happy-go-lucky type of girl and say I’m such a chilled-out kid. 

I loved to wear bucket hats before I got alopecia but now, I love them even more. I wear them because I like how they look.  I don’t feel like I need to cover my head and I don’t really want to wear a wig. 

My close friends are so kind and don’t care either. 

I love hanging out with my friends, doing Taekwondo, Hip Hop dancing, playing with my dog and spending time at the beach.  

Jesse Ferguson’s Alopecia Update.

It’s the 20th of September 2022 and I want to tell you about my progress at taekwondo. There’s good news and there’s disappointing news, but mostly good.

Since the last week of July, I’ve successfully attained 2 of the 5 tags necessary to be able to grade for my black belt. I have been keeping up my weekly attendance at ATI Martial Arts Joondalup and getting new foot and shin guards.

The disappointing news is that I’ve been unwell a few times over the past 2 months and it’s meant I had to miss some of my classes, so I was unable to gain any of the 3 additional tags I needed for this Thursday’s grading. Yes, we grade…even on public holidays, may the Queen’s soul rest in peace. Then, sadly, I got the flu on my birthday 2 days ago and it’s preventing me from being at the grading even as a spectator, so it just means I’ll be working twice as hard once I’m fully recovered to earn those 3 coloured tips to put on my current red with black stripe belt.

In one class, I accidentally put my belt on inside out and it looked like it was a red belt (without the black stripe) so my instructor reminded me to wear it correctly, otherwise, I was dropping down a belt without even realising…attention to detail is part of the values´ system taught in taekwondo.

I have another chance to grade for my black belt in December, which coincidentally is when my next milestone update is…so fingers crossed I have great news to announce.

Now to the most important part: how my AAAF sponsorship has helped me on my journey with alopecia.

It took the financial pressure off my Mum, enough that she was able to set aside money for my new foot and shin guards, which were long overdue and driving my instructors crazy that I was still wearing my junior set from when I first joined at 8 years old (you can imagine how much my feet have grown since then, being 16 now!)

As you have to pay for classes regardless of whether you can attend or not, it was also less stressful knowing my martial arts were paid for, even on days I was sick and couldn’t go. I continue to benefit from doing my martial arts, from both a physical and mental standpoint; they allow me to condition my body in preparation for when I join the army once I graduate in year 12, 2 years from now. They have allowed me to focus on my body as a strong, powerful and resilient vehicle in which to live and take the focus off my scalp in an otherwise superficial society.

My AAAF sponsorship and my martial arts training go hand in hand, delivering healthy viability to stay positive and active while being social at the same time (and that is the most important thing for anyone with alopecia…To not hide away from the world.) 

Outside of ATI, Student Services at my school (Belridge Secondary College) put some AAAF brochures and posters up in the Student Services building; this is where kids go for support from their year coordinator and school psychologist and hopefully, it will bring awareness to kids who have never heard of alopecia before as well, as serve as reassurance that there is a support network should any future students develop alopecia, as I’m sure I’m not the first at my school and won’t be the last. It feels good to know that I am the one to bring awareness about alopecia and the AAAF to my school. I have also managed to accomplish the same at my weekly army cadets unit (507 Joondalup) as nobody there had ever heard of alopecia either, including our Padre (cadet title for psychologist/support staff) so they willingly put some brochures in their office and headquarters too.

I’m still yet to begin my journey on immuno-suppressant therapy as the public health system has a tediously, long waiting list between appointments at the Perth Children’s Hospital. Still, I’ve had my MVR/Rubella and Hep B booster jabs in the lead-up to starting the Methotrexate tablets. In August, I participated in a Pfizer study on people of all ages and genders with different types of alopecia. It took a week and was very detailed, answering lots of questions about diagnosis, medications, symptoms, health professionals, psychological and physical effects, support available and social impacts. I was asked to send videos and photos of myself talking about my alopecia and also any medical costs or additional factors, that prevented me from getting any help for my condition. The pharmaceutical company claims they need all these case studies to put forth their intended medication for FDA approval. Whether it works or not, it’s good to know I’ve been instrumental in the development of a future, potential cure or aid for alopecia.

And yes, of course, I made them aware of the AAAF and all the great work they do to support our alopecia community.

Victoria Gandera’s August AAAF Update.

It has been about two months since my last update. Here is how I am going with my Singing scholarship in 2022. I am very grateful to have received this as I have now moved on to learn more advanced and more difficult skills with my singing.

This semester, I have learnt more new vocal exercises, the ree reh raw rah roo one to help build my breath and the diaphragm for holding long notes. I really enjoy learning more difficult and higher-skilled exercises as it makes me feel really good when I do them well and get congratulated, as well as they can also prepare me for more difficult pieces and songs for exams. I am now doing a Grade 4 Singing Exam with the Australian Guild of Music Education. My songs are Valerie by Amy Winehouse, A Thousand Miles by Vanessa Carlton, Fearless by Taylor Swift and Colours of The Wind from Pocahontas. 

I am also very thankful for the scholarship because I can now do so much more with my skills. And something even better is my singing teacher herself, Miss Elizabeth Panov (Miss Liz). She keeps on encouraging me and helping me so that I don’t feel down when I am working on hard pieces and exercises and cannot master them as quickly as I would like to. She is an amazing teacher and I would not have anyone else on the entire planet as my music teacher.

I actually need to share something exciting with you – In my last exam that I did in June, I was recommended for the award!!! It is given only to the top few students if they do achieve grades of a certain level and I am so excited that in this exam I got the highest grade so far!!!

Thanks to this scholarship not only that I can learn so much more in my music, but I can escape from life and what challenges it throws at me when I am singing. This helps me relax, focus and calm my inner body with the things that I actually like and enjoy. I really wish for everyone to find something that helps them the way singing helps me.

Once again, thank you AAAF for the Scholarship/Sponsorship and I hope that other kids will get to enjoy my little update.

My Alopecia Story – Lilly Cowley.

My name is Lilly Cowley. I am 13 years old and I have Alopecia

I have had Alopecia since I was 7. I remember that at the time it was very confusing. I didn’t understand why it was happening to me and I hated all the questions that I would get asked. The most common was, “Why did you shave off your eyebrows?” To me, this was a stupid question because why would any 7-year-old shave off their eyebrows? The first hair loss I had was my eyelashes and very shortly after, my eyebrows fell out. It was weird to have no facial hair. 

The uniqueness of Alopecia and the lack of knowledge have made explaining things to people very difficult. Kids can be cruel and adults can make things uncomfortable. I would love people to better understand what Alopecia is and how it affects people. 

Now that I am older and have had Alopecia for 6 years, I can handle situations confidently and with information. My eyebrows have grown back but my eyelashes kind of come and go. I don’t think in 6 years I have ever had a full set of eyelashes though. Maybe one day I will try extensions or other alternatives but for now, I embrace my unique qualities.

My family have been amazing as we have all had to go on this adventure together. My Mum is my number one supporter and without her encouragement, I may not have the resilience and determination that I do today. My Dad and brother are amazing as well. I love them so much!

My biggest passion is swimming. I love the rush of competing in big events, being part of a team and the support from my Coach, Kirk. My Club is Saints Swimming Club and it is in Cairns QLD.  I have tried other sports over the years like BMX, dance and netball, however, swimming has always been my first choice. I have recently done my first open water competition and really enjoyed it. 

It is because of the sponsorship from Australia Alopecia Areata Foundation (AAAF) that is making it possible for me to continue doing something that I love so much. It gives me the confidence to achieve amazing things. I know that I am special along with the other 1% of Australians that have Alopecia. We are not different or weird, we are UNIQUE!

Thank you for this huge opportunity and I know that it is helping my family a lot.  

Ava Lambie – My Alopecia Story

Hello, my name is Ava. I am 11 years old and from the Gold Coast. In 2020 I was diagnosed with Alopecia Areata. I felt scared and lonely. I went through several treatments like Clobex which is a type of shampoo. In my thoughts, it did not do anything but make it worse by tangling my hair so when I brushed it pulled more out. I then started another treatment called DCP which is a cream that stops my immune system from attacking my hair. The treatment seemed to work and my hair regrew.  

I went to an Alopecia support group lunch at Harbour Town Shopping Centre and met some really nice people with Alopecia. I felt supported and like I wasn’t alone anymore.  

I decided I wanted to raise money for the AAAF. I made a lemonade stand at my house and my Mum made a Facebook Go Fund Me page. I raised around $1200 which was mind-blowing.  

I went to the Alopecia Camp on the Sunshine Coast in 2021. I met so many new girls and boys with my condition. I felt happy and uplifted when I made new friends and it was just the time of my life, I didn’t feel alone anymore and I was able to be myself. 

After I thought the Alopecia was all gone it came back again this year. I began to lose hair again, most of my eyelashes on my left and some of my eyebrows. I felt insecure and heartbroken. I have tried the DCP cream again and had no luck so far, the doctors put stronger ingredients in the cream to stop it. I also have low iron; it does not help with my daily life as I struggle in class to stay awake and it is difficult to do everyday tasks. Low iron also makes your hair weak and it falls out a bit.  

Since I have had Alopecia, I have been bullied on a few occasions. I was asked all the time what had happened to me or if I had cancer. There was this boy who was just nasty to everyone except to his friends.

I believe that there are always bullies in our lives no matter if we’re tall, small, thin, wide, pretty or ugly. 

I am so excited about this upcoming camp in Sydney, I can’t wait to catch a flight with all of my new friends and hang out again. The only bad thing is I have to wake up at like 4:00am which sucks because I am not a morning person.  

I recently started Silks; it was like a dream come true watching all of the older girls do cool tricks. I am so grateful that the AAAF is helping me with my dream by sponsoring me. It’s just so kind of you and I will strive to do my best and show you my progress. 

Thanks again 

Ava Lambie 

Airlee’s Scholarship Update.

I would like to thank the AAAF for my gold scholarship! This scholarship has paid for my dance classes which are tap, musical theatre and contemporary dance private lessons. Thanks to these, I have improved so much that two months ago I was asked to join the performance team, which means I can now compete in different tournaments starting in August. I got an email last week from the dance studio saying that all the Teachers are so impressed with my dedication and improvement, so I had been selected for the Elite team. This is a dream come true!

At the midyear dance concert, I performed solo on stage. I had never danced by myself before on stage, but I absolutely loved it! When I am on stage, I can forget about everything, dancing is my happy place. 

My favourite days of the week are the days I have dancing in the afternoon. A few years ago, when I lost all my hair during the lockdown, I wouldn’t even go to the mailbox as I didn’t want people to see me and I was so upset, but now, I dance without a wig. I even like that I don’t have to worry about hair getting into my face when dancing.

I am proud of who I am, and my confidence has grown so much through dancing.  I can’t thank the AAAF enough!

Victoria Gandera’s Story Update.

It has been three months since I received the scholarship so here is my update.

It has been a tough couple of months health-wise but hopefully, things will get better now.

This AAAF scholarship has helped me a lot in so many ways. 

To begin with, it helped with my music studies this year. I have learned many new singing techniques to help with my breathing and for holding notes longer. One of these techniques is called the iron gate. This is for when I am doing my counting vocal exercise. It helps save the air that you have in your diaphragm. When you are using the iron gate technique, you say a number, and then you lock all the air back up by closing your mouth.

The other way it helped me is that now I’m able to have more time in the studio with my teacher.

Thanks to that I am able to learn harder songs for my exams now. I have been learning some amazing songs by various artists and from various genres. Some of them are by ABBA, some from musicals, and I have also learned some rock songs by Avril Lavigne and classics by Olivia Newton-John. 

These songs are all part of my preparation for my grade 3 vocal exam, which will be coming soon. I will also be doing another grade at the end of the year which wouldn’t be possible if not for the scholarship – so thank you AAAF for allowing me to have that.

But the biggest benefit to all this is how much I have improved not only in singing but also in how much more focused I am. It is a lot of work to prepare for exams and I had to learn to manage my time better to fit it all in.

I am more focused, but also happier. Singing makes me happy and forget about the little troubles or snarky comments from kids at school about my hair. So I really hope I’ll be able to keep singing for more years to come.

Hopefully, on my next check-in, I can share the results from my vocal performance exam with you all!

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.

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