Since our last Milestone Claudia has really come a long way in her self-esteem and how she is managing her Alopecia. She has received her new Freedom Wig which has been such a blessing. The wig enables her to participate in Cheerleading with the confidence that she can do all the required movements without the worry that it might come off at training or even during competitions. This used to be a real concern for Claudia. Due to the support of amazing charities like Australia Alopecia Areata Foundation and Variety Children’s Charity Claudia has been able to participate in her much-loved cheerleading with the utmost confidence. The support they have provided during a very challenging period in her life has been immeasurable!
This year Claudia will be competing in several Cheerleading competitions, one mid-year and two at the end of the year. They will be very big competitions held at Sydney Olympic Park with many participants and clubs from all over Sydney & Australia. Claudia’s position is called the “Flyer” which means exactly that, she is the team member at the top that gets lifted, tossed about and supported by an amazing group of team members. In Claudia’s words “It makes me feel on top of the world and I have the best view”.
Claudia will also try and take her Cheerleading to the next level in 2024. She will be participating in trials to gain entrance to a selective sports high school for Cheerleading. The school is an Olympic pathway school and who knows, you may even see her at the 2032 Olympics in Brisbane which is the first year Cheerleading will be an event!
The sponsorship program from the AAAF has allowed Claudia to pursue her passion for Cheerleading and follow her dreams without being held back by her Alopecia.
Over Christmas and new years, I travelled along with my crew, Olive to Williamstown Victoria. In Williamstown, we competed in the Australian international cadet national championship where we qualified for the Australian team to sail the next week, in the International Cadet World Championship. Throughout these regattas we sailed against world-class sailors from all around the world and finished 7th overall in the nationals and 12th in the world championships, both results I am immensely proud of. Our results over the three weeks have earnt us a spot in the Australian Team to compete in Nieuwpoort, Belgium in July later this year.
I have also enjoyed team racing with my school team qualifying for the interdominions in New Zealand in 2022. The high standard of sailing that I showed throughout these regattas would not have been possible without the support of the Australian Alopecia Areata Foundation in gifting me an AAAF Gold Sponsorship. The sponsorship has contributed to a considerable amount of the training and entrant fees throughout my sailing over the last year. With the support of AAAF, I was able to travel to Victoria for training camps with the Australian team. The sponsorship also supported other local training and my entry fees into various events throughout the year.
Sailing is a sport in which females and males compete against each other. It requires a lot of preparation and interaction among 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. You can’t really hide not having any hair in sailing as we get changed together and swim and have events after races. I had to learn that my alopecia would make me feel worse if I missed out on things trying to hide it.
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. Through the generous support of the AAAF, I have been able to further my sailing skills and ability which have given me a tremendous amount of confidence in myself and my appearance.
My name is Michael, I am 11 years old and am a level 3 Men’s Artistic Gymnast. I was diagnosed with Alopecia Areata when I was 9 years old. My mum and my sister have Alopecia as well. In the beginning, I had a few patches here and there but my hair would come and go, then in 2022 my hair rapidly started to fall out and I lost pretty much my entire head in a couple of weeks. Because I had a few patches I decided to shave my head and I kept it shaved for a little while, this made me feel better about the patchy hair that was growing on and off. My mum shaved her head so we had a fun time and shaved some patterns like lightning bolts into my head while we were shaving it.
I was super lucky this year and got to compete on behalf of my club which is Sydney Gymnastics Centre at Rooty Hill at The National Clubs Carnival in Queensland. It was amazing competing against other clubs from around Australia and I even scored some personal best scores on some of the apparatuses like pommel and vault. I also qualified and competed at the NSW State Championships this year. My favourite apparatus is the pommel it is the one where you go around in circles on top of the apparatus, you have to try and get 10 circles in a row without stopping.
When I lost most of my hair my squad and coaches were so supportive. We talked about what was happening to me and it made me feel better when my friends understood what I was going through. One of my favourite things about gymnastics is being on the competition floor with my squad we all cheer one another on and give high fives all the time.
Being sponsored by AAAF for doing what I love makes me feel so special and proud. I am happy to show other kids like me who lose their hair that you can still do your favourite thing without hair.
Hi, my name is Isabella Hoult, I was diagnosed with Alopecia Areata when I was 10 years old. My mum and my brother both have Alopecia as well. I am 13 years old and am a competitive gymnast. I am currently doing level 4 Women’s Artistic Gymnastics. The Australian Alopecia Areata Foundation is sponsoring me to do my gymnastics which is amazing.
I first started losing my hair just before the lockdown in 2020. I have had many patches come and go since then but at one stage I had almost complete hair loss on my head. Whilst this was hard, having my mum and brother going through Alopecia as well helped me to stay strong. I started high school this year, year 7, and that was tough with Alopecia too, but I asked my year leader if I could speak to the whole year about what Alopecia is and what it is like to look different. She said yes and because I spoke so well they then arranged for me to speak to the entire senior school which really helped with how people treated me at school. They no longer thought I was sick and knew what Alopecia was.
At Gymnastics I am in a squad and we sat down with my coach and squad talking about what it is like to look different and how sometimes we don’t realise the things we say can hurt others.
This year I qualified for the State Gymnastics Competition which was amazing, and then I competed at State where I achieved some personal best scores and had a great time competing. My favourite thing about Gymnastics is competing, I love being on that floor and performing my routines as well as knowing if there is anyone watching that has something that makes them look different I hope they look at me and think “wow she is out there with her patches competing and not letting her Alopecia stop her”. I want other kids and people to know that Alopecia shouldn’t stop you from doing anything, we are just the same as everyone else and can do everything that everyone else can.
I am so excited to see where Gymnastics takes me next and look forward to sharing my exciting achievements with you in my next update.
Meet Claudia, she is 11 years old and started losing her hair at the beginning of 2022 at age 10. The hair loss started above her right ear. More patches started appearing around the back of her head from ear to ear. Within 6 months Claudia had lost all her hair followed by her eyebrows and eyelashes.
This time was very traumatic for Claudia and her family, something that was so aggressive and coming from nowhere really hit the family hard. She started seeing a psychologist straight away and this largely assisted with her coping strategies. Throughout the whole ordeal, Claudia has remained extremely positive and resilient. She has the most amazing group of school friends, family and a cheerleading team.
During her hair loss journey, Claudia has maintained doing what she loves the most and that is cheerleading. At first, she just wore a beanie as her hair was falling out however progressed to wearing a wig. Her cheerleading team and coach were so supportive during her hair loss, they always made her feel very comfortable and some of them even wore a beanie in support.
Claudia is a flyer which is the person at the top of the stunts who gets lifted by the team, she has managed with her current lace wig however sometimes feels like it might come off. This makes her a little nervous so we have ordered her a Freedom Wig which will suction-fixate to her head. This will enable her to do all the cartwheels, back handsprings and tumbling whilst feeling totally confident it won’t fly off. She should have the new wig by the end of the year ready for a big year of cheerleading and competition in 2023.
The unexpected financial strain that the disorder has come with has been a bit of a shock with Dermatologist & Psychologist appointments, medication, wigs & accessories. The Silver sponsorship that has been generously given by the Australian Alopecia Areata Foundation (AAAF) has given Claudia relief and has enabled her to continue doing a sport that she loves so much. This is instrumental to her coping with the disorder and adjusting to her new way of life.
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.
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.
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 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.
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.
Love, Alopecia 