Claudia Notley – Milestone

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.

Michelle Law’s Final Update.

Taking part in an AAAF sponsorship has been an amazing experience that I’m so happy I decided to apply for! Learning how to ride a horse has always been something on my bucket list. I wanted to experience the feelings of liberation and self-assurance that come from horse riding, but prior to the sponsorship, I didn’t have the financial means or confidence to do so.

Having a sponsorship was helpful on an emotional level on those days when I felt like shying away from the world. I’m a naturally introverted person, which alopecia tends to amplify, so the responsibility of having sponsorship and regular lessons pushed me to step beyond my comfort zone and remind myself that life is about living and refocusing on what makes me feel empowered and healthy.

Being at the equestrian centre in Malabar for my lessons was also beautiful. Getting to horse ride right beside the ocean and with sweeping views of the hills was picturesque, and provided opportunities for reflection, away from the hustle and bustle of everyday life. Some of those reflections included reminding myself that people are far more focused on themselves than someone with alopecia. Especially when you’re doing a sport, when everyone is mostly focused on developing their skills or, in this case, not falling off their horses!

I’m so grateful to AAAF for providing opportunities like these sponsorships for our community. The benefits for me have been long-term, as I now feel emboldened to engage in new and different physical activities that I hadn’t felt brave enough to try before. (Some of the sports I’d like to try next include karate and archery, to name a few.) I’m also excited to continue working on horse riding in my own time to take advantage of those longer-term effects of fitness and self-reflection. Thanks, AAAF!

My Alopecia Story – Piper Stephens

Hi, my name is Piper and I have just turned 9 and finished Grade 3.  About 4 years ago my mum was brushing my hair when she noticed a little bald patch.  For a while, I just had little patches that moved around a bit, but then the patches got bigger and bigger, and in Grade 1 I lost over 40% of my hair and had no hair on the top of my head.

It was around this time that I started cheerleading.  I also received some trial mediation that resulted in all of my hair growing back.  My love of cheerleading also continued to grow, and by Grade 3 I was selected for an elite competitive cheerleading team at Infinity Athletics, where I was one of the youngest in the team.

About 12 months ago, I started to get little patches of hair falling out again.  This time, my hair started falling out really fast, and I have now lost around 80% of my hair.  Thanks to the Doctors at the Queensland Children’s Hospital and the trial mediation (which also helps my juvenile idiopathic arthritis) my hair has stopped falling out and a little bit of it is growing back, but I still only have about 20% of my hair, which I love styling in fun hairstyles!

It has been a bit hard, and I struggle sometimes with people staring and some kids at school making fun of me, but I know it’s because they don’t know about alopecia and don’t understand.  My cheerleading family is the best, and no one ever makes fun of me and they are so supportive and have been there for me no matter what.  They know that you don’t need hair to be a great cheerleader!

In 2022, my cheerleading team competed in a number of competitions, and placed a few times, including 1^st at Battles, 2^nd and 3^rd at Majors, 3^rd at Winterfest and 5^th at Nationals.  In 2023 we will be travelling to Melbourne and Townsville to compete and I am so excited! I am also excited to spread the wording about alopecia areata, so more people understand what it is.  In cheerleading, everyone is included and has a place and it doesn’t matter what you look like, so I want to use my sponsorship as an opportunity to educate people about alopecia areata, and also to help me embrace alopecia.

Faye Read’s Final Update for her AAAF’s Sponsorship.

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. 

Michael Hoult’s Story

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. 

I can’t wait to share my achievements with you.

Isabella Hoult’s Story

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.

Isabella Hoult

Claudia Notley’s Alopecia Story.

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.

Thank you AAAF!

Michelle Law’s Update.

Being able to ride a horse with confidence has always been a dream of mine, and I’m excited to say that I’m well on my way there thanks to the riding lessons I’ve been undertaking during my sponsorship. 

Beyond riding skills, I’ve also learnt how to saddle and care for horses, and build relationships with certain horses at the equestrian club. I’ve grown particularly fond of a horse named Billy. He’s a fairly lazy and grumpy fellow most of the time, but we’ve developed a rapport that has led to him actually trotting and undertaking real workouts! Building that relationship has been incredibly rewarding. Horses are such emotional and sensitive creatures and it’s a special feeling when a horse grows to trust and respect you.  

Over the course of my lessons, I’ve found myself becoming more physically and mentally strong. On a physical level, I think I greatly underestimated how taxing horse riding can be. One of my instructors is constantly reminding me that horse riding is an extreme sport, just like BMX riding. Another has compared it to playing the drums, as it requires a great deal of concentration and coordination – with each arm and leg doing a different job. As someone who has done neither before, it’s been a steep learning curve! I’ve also noticed that my general fitness has improved, and I’ve been making more frequent trips to the gym to build my endurance.  

Mentally, I’ve learnt a lot more about my own strength and fortitude. About a month ago, I had a hiccup during one of my lessons where I fell off my horse and sustained a mild concussion. However, I’ve recently – and literally – gotten back on the horse and I haven’t looked back since. The injury was a temporary knock to my confidence, but in returning to lessons I’ve learnt to trust myself and my own capabilities. I’ve been reminded that during periods of uncertainty, I have a great deal of bravery, which is something I developed when I was first diagnosed with alopecia as a teenager.  

It’s been amazing seeing the life skills that I developed as an adolescent continuing to help me overcome challenges as an adult. And I’m really looking forward to seeing where the rest of my sponsorship takes me.

Emma McPhail’s Update.

After 9 months of my gold sponsorship, the development in my performance skills has been significant. Over the last 3 months, I have had the privilege of performing in my Stage 2 dance showcase and participating in the Adelaide Christmas Pageant. Within the leadup to my dance showcase, I raised awareness for alopecia by promoting the differences between my hair routines with and without the wig, and the complexities of coordinating a wig for a dance performance without gel and/or hairspray.

After the showcase, I was keen to begin working on pageant routines. The Adelaide Christmas Pageant is the largest Christmas pageant in the southern hemisphere, and it was amazing to participate in the 90th-year celebration. In the pageant, I danced without my wig and covered my remaining bald patch and regrowth with purple hair glitter.

Within the next 3 months, I’ll have my dance studio concert weekend in which I have 7 concerts over the duration of the weekend. Lots of hard work has gone into this concert preparation, but it has truly paid off.

Through dance, I have been able to experiment with an array of hairstyles with and without my wig which has significantly boosted my confidence. Since my complete hair loss in August last year, I have struggled with accepting my new hair growth and loss. As my hair grew back it became darker and curlier which was a direct contrast to my original straight blond hair.

Whilst I am forever grateful that my hair has regrown, the change became difficult to manage, making me self-conscious about my hair growth. Over the last three months, I have been working with Travis Hairdressing to find a new style for my regrowth that I feel comfortable in. Whilst these last three months have been difficult due to injuries and not being able to dance as much, I have found a way to become more present and accepting of myself.

I am forever grateful for my gold sponsorship and the opportunities it has provided me with. I have had the privilege over the last 9 months to work with an amazing group of dancers who have accepted me and my alopecia, and are always there to support me when needed.

Jesse-James Ferguson’s Update #3

Time for an update on all things Alopecia Universalis in my world…it’s been 3 months since I last updated everyone. Since September, I have been attending my martial arts classes twice a week to get more tags to earn my black belt. The good news is that I got another tag so I’m close to having enough to meet the criteria for the next grading early next year.

The most recent tag I received was for self-defence. I’m still trying to learn my patterns so I can progress to the next level but memorising patterns isn’t my strong suit.

I missed December’s grades due to the doctor’s orders, who told me to take it easy after a recent change in medication. On this new medication, I have to be closely monitored as both medications lower my blood pressure considerably. I was feeling quite light-headed and tight-chested, having a little trouble breathing and getting a tingly feeling on my head when I took a deep breath, so the dermatologist advised I take half the dose. It seems to have settled down and though not ideal for as quick of a result as if I was taking the full dose, I’m still hopeful that in a few months of suppressing my immune system, I might see some hair growth but so far, no luck. It’s not a long-term solution, but any chance to remember that feeling of having hair (even if it’s just a tiny patch for a brief moment) will be worth it, it’s a mental thing, like a fond memory that makes you smile even though the moment is lost in time. I am being careful to be extra healthy so as to not put my health at risk, since my immune system is on holiday.

I really want to thank the AAAF for their continued support with my sponsorship, it helps me to stay resilient mentally when I’m able to stay healthy physically, through my taekwondo and continuously having new goals to strive toward at ATI helps me to keep the momentum in the rest of my life.

Last week, at my army cadets’ end-of-year parade, I was surprised to receive the Encouragement Award. It means a lot because, despite some setbacks I’ve faced this year with my health, my 507 Unit at Joondalup recognises my efforts and resilience thus far. Also, two of my adult cadet staff leaders have also received the same award in past years, so I know I’m in good company.

I’ve included the pics from my cadet award and my martial arts tag, but as it was an end-of-year party, I’m not in cadet uniform so I’ll have to wait till the New Year to re-do the photo wearing a uniform with my medal. 

Mum said that she would have been nervous about me starting the immunosuppressant therapy if it wasn’t for the AAAF’s Facebook page, reading other members’ comments about their medications having success, especially other teenagers; these comments gave her peace of mind and made her feel more comfortable going ahead with the decision, so I also want to thank you for that.

The AAAF is honestly the best line of support for anyone new or veteran, where alopecia is concerned, because you get to read about it and interact with real-life people who live with it every day, they can tell you what’s what and what they’ve tried; what has been successful or unsuccessful and remind you that you’re not the only fish in the pond.

I’m really looking forward to what 2023 holds and regardless of what may or may not sprout on my scalp…I wish everyone good health and good luck in their own endeavours. Thanks, everyone.