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!
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.
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.
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.
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.
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.
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!
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
Alopecia is a life-changing event that causes a lot of unknowns to enter into our life. Since this can feel scary, a normal response to this is for the brain to focus on the negative aspects about all of this new uncertainty.
However, these negative thought patterns can take up a lot of our energy and, ultimately, don’t change the fact that we are still experiencing hair loss and all the unknowns that come with it. Negative thoughts can eventually lead to us feeling tired, stuck and low on self-confidence.
Once we can release these negative thoughts we can begin to experience more acceptance of the uncertainty and hair loss journey as a whole.
Here are 5 tips to breaking the pattern of negativity so you can begin feeling more acceptance, confidence and ease in your experiences.
1. Notice the thought
Simply notice that you had a negative thought, without judging yourself or pushing it away.
2. Recognise the emotion(s) that come with the negative thought
Notice what emotion(s) show up when you have the thought.
Example: “I’m going to feel weird if they know about my hair loss.” One emotion that could come up from this thought is shame.
3. Process the emotion through the body
Do some movement (like dancing, exercising or yoga) or a self-care practice, like journaling, which will help to move the emotion through you.
4. Banish the thought
You can use language like: “I banish you”, “You are no longer welcome here”, “You no longer serve me and I release you now.”
5. Create a newempowering thought
Replace the negative thought with something that feels positive and empowering.
Example: Instead of “They are going to shame me when they find out about my hair loss” replace it with “They are going to be inspired when they hear about my hair loss” or “I’m going to feel relief when they know about my hair”
Choose a thought that feels true for you. This may feel hard at first, but the trick is to keep practicing. Over time, you will be able to create new thought patterns!
One of our very own AAAF community members, Sheridan Ruth – a yoga therapist, meditation facilitator, and empowerment coach – created a video outlining these 5 steps in more depth. Watch it here!