Tristan’s Sponsorship and Boxing Update.

Australian Alopecia Areata Foundation’s sponsorship program has given me the wonderful opportunity to pursue something I was keen on trying for an awfully long time, that being boxing. I have been so grateful for this experience so far, as having been diagnosed with alopecia along with other health issues, boxing has been a great stress relief for me and has had a positive impact on my overall health and well-being thus far. The first session was as expected; I was totally unprepared and totally unfit for what was to come. Although just starting off with the basics, I would soon learn how physically, and mentally challenging boxing could be even if it was just training on the pads for the most part.

Each session that would pass would become slightly more intense than before, but my form would also grow to match the increasing intensity and combinations that I would learn each week. Every session would also end with strength and conditioning exercises which would include sit-ups, pushups, planking, squatting and burpees which would leave me absolutely exhausted.

I have learnt so much in this time while boxing, even my trainer Faisal wished he had taken a video of me when I first started to see and compare how far I have come on my journey. Both my fitness, power and overall skill have improved dramatically in my time so far. Each session left me red in the face and dripping in sweat which in turn actually benefited my skin as well, which both Faisal and a few of my friends attribute to me sweating and detoxing out toxins through my pores.

It is also exciting to note the extremely positive progression in my hair regrowth during this time. At the start of my tenure in boxing, I was still relatively bald and still unsure of what direction my alopecia would head in. But through consistent visits to Sinclair Dermatology located in Melbourne, following a regime of the medication Baricitinib a day as well as steroid injections every 2 months I can happily say I am back at around 95% full hair regrowth with my dermatologist even insisting I stop the medication altogether. With this regime along with my boxing training and gym workouts, I can confidently say it all had a significant impact on improving my health and giving me remission of my alopecia.

My appreciation for being selected by AAAF is enormous and this will be an experience I will never forget.

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!

My Alopecia Story – Jamie Duncan

I’m delighted to share with everyone here that I was selected for a music education sponsorship through AAAF’s 2022 sponsorship program, and I couldn’t be more excited about the incredible opportunity.  I am so grateful to AAAF and this community for supporting me on my alopecia journey and wanted to share more about my past, present and personal ambitions for the future – look out for 4th brother!

I think my alopecia story actually started when I was much younger than when I was first diagnosed with Alopecia Areata, which didn’t happen until the age of 27.  At an earlier time in my life, it was never noticeable to me, or anyone else as I recall, as I was an especially cool 90’s pre-teen with a fashionably long-ish middle parting haircut at the time – yo!  When I did have hair on my head, I had thick hair, like my Mum’s I always said, but I do remember a moment one day as a kid, just kind of playing with my hair, and noticing that, as I did, it was coming out in my hands.  I remember thinking, “that’s weird, let me do that again and see if more comes out”, and it did, so I promptly stopped, thinking I might just lose it all if I didn’t!  I didn’t even tell my parents, brothers or friends about it, it was just something that happened and then I completely forgot about it.

That earlier experience did return however, at 27 as I mentioned earlier, and at a time that was easy for me to associate to memory, as my wife Laura and I were excitedly expecting our first child, our daughter Carmen.  After noticing the classic signs of Alopecia Areata, small, Scottish 50 pence piece sized patches, I took myself off to the GP and was duly diagnosed with AA.  It was very much a “do you have any stress going on in your life at present?”, line of investigation, something I think I could always answer yes to, but I was, am, a relatively laid-back individual, and wouldn’t have suggested anything significant as a known source of concern.  Anyway, I was given a treatment of steroid lotion to massage into my scalp and sent on my merry way to see if it helped.

Whether it was the lotion or the excitement of being a new father for the first time I did experience regrowth.  Great, I thought!  Until…  yeah, Laura pregnant again, our beautiful son Donnie this time, and all the signs of progressive AA hair loss all over again.  I personally put it down to coincidence, but whatever it was, this time it wasn’t showing any signs of recovery, not over weeks, months or even years, and I decided that I just had to live with it.  That was probably the first time that having AA was on my mind, and where I was conscious of its effect on my appearance, even though it was no more than about 10% to 15% of my hair back then.  Every trip to the barbers involved an explanation and a lot of people had an opinion on it.  Looking back, I’m actually amazed at how few people actually understood the condition.

Fast forward to a new life in Australia for us all, and at 40 things really took a turn.  I really depended on the AAAF community, as I was losing hair FAST, and EVERYWHERE.  My AA progressed to Universalis and I honestly didn’t know what to do or how to deal with it.  It was emotionally draining, I remember that.  I was anxious and fearful about the state of my general health at that time.  I was waking up with piles of hair on my pillow, showering and handfuls of hair coming out in my hands.  I was open to trying anything and spent months in treatment for steroid injections in my scalp, as that was a priority for me if anything could be done.  I remember experiencing minor benefits in one area, only to be losing hair in another, it was very difficult.  I was never a hairy man, but eyebrows, eye lashes, face, under arms, arms, legs all lost hair and you can’t prepare for that happening or the emotional and psychological impact of that.

I braved the shave.  I took myself to the barbers the first time I decided to do it.  The guys there were great!  We started on a gauge 4, then a 3, a 2, 1 and even zero.  I still wasn’t satisfied and said, “can you just use a razor?”  I got the cleanest shave I’d ever had in my life – and it felt amazing, different, but amazing!  I quickly realised this was something I’d need to master at home and have been shaving daily ever since – you see I still have little patches of facial and head hair.

It was tough, but with the love and support of family, friends and great communities like AAAF, I was able to get through it, and I now spend every opportunity I’m presented with helping less aware people understand alopecia better.  Keeping my mind on family, health, happiness, work and fun is a great distraction from alopecia and that’s where the sponsorship comes in.  I’m an aspiring creative, with a love of house music and I write, produce and DJ for fun in my spare time.  With the support of AAAF’s Sponsorship Program, I was able to sign up to a program of courses at Point Blank Music School in London, where I take classes online, collaborate with classmates from around the world and have had the most amazing time learning today’s technology for producing music.

Remember 4th brother?  Taking the course has given me the confidence to progress my music goals, and this year I kicked a life goal with AAAF’s support, releasing my first piece of music publicly and dedicated to AAAF “4th brother – feels good (aaaf demo mix)” on Spotify, Apple Music, YouTube, Amazon Music and others and I hope to release more in the future too.  It’s been amazing to have the support to help develop my skills, build my confidence and share my music and I couldn’t have done it without this support, so THANK YOU AAAF, you do amazing work in support of so many and I really, really appreciate it.
Jamie / 4th brother

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!

Katie Hale Alopecia Story.

My name is Katie Hale and I have Alopecia Universalis. My hair loss came on rapidly at the age of 23 and it hasn’t ever come back.

Like most, I found a small circular patch of – well, nothing – on the back of my head on the right side. Having no idea what it was, I just assumed I had burnt my head at some point with my straightener and it fell out. My friend and I even had a good laugh about it and couldn’t stop touching it.

Fast forward a couple of months and I noticed it felt bigger. Then it just started to spread. Within about 2-3 weeks, I had the beginnings of five patches. Within the next seven days, I lost half the hair on my head which was incredibly stressful and traumatic.

I had no other point but to shave most of it off. I tried to salvage a longer patch on the top of my head but that lasted less than three days.

Over the next three months or so I lost the rest of the hair on my body. Fascinatingly, the hair on my right side always went first – my right eyebrow split in the middle, then my left, my right eyelashes fell out, then my left and most of my scalp patches were on the right.

I tried a number of treatments but they all just made me incredibly sick and never really succeeded in triggering hair growth. I couldn’t justify wreaking havoc on my physical health for the sake of some hair, so I made the (incredibly tough) decision to stop.

I was terrified of wigs so I have always rocked the bald look, which comes with its challenges. People often treat you differently and while that can be disheartening and upsetting, I feel like I have an opportunity to make life a bit better for others who look like me. If they stare at me because I’m the first bald girl they’ve seen, then maybe they won’t do it again to someone who isn’t as strong or who might be more self-conscious. Or if someone has hair loss, maybe seeing me go bald might just help give them that little boost of confidence to try it themselves if they want to.

I want people to feel confident to be themselves in and out of wigs so if my experience makes it that little bit better for someone else, then I’m happy and it’s worth it.

That is exactly why I’m so excited to raise awareness through this sponsorship – no one should ever feel like they are held back by their alopecia, but so many are. I want to show people that no matter how scary it is at the start, you can still achieve whatever you want to and do the things that make you happy.

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