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.
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.
Janus Kinase Inhibitors (JAK inhibitors) are a hot topic within our community peer support spaces and are the number 1 repeated questions being asked to the AAAF team, so we wanted to provide an update about the current position regarding JAK inhibitor drugs as a potential treatment for alopecia areata.
Firstly, what is a JAK inhibitor and why are they being explored as a treatment option for alopecia areata?
JAK inhibitors are a type of drug that suppresses the activity or response of one or more of the Janus Kinase enzymes, also known as JAK1, JAK2, JAK3 and TYK2. JAK enzymes are known contributors to the autoimmune process. In a nutshell, JAK inhibitors could block the inflammatory pathways that occur in active alopecia areata, reducing the inflammation that occurs around the hair follicles and allowing hair to grow once again.
What is happening with clinical trials for JAK inhibitors for alopecia areata?
There are lots of stages of research, starting out with basic research and pilot studies before moving into clinical trials. Clinical trials for JAK inhibitors as a treatment for alopecia areata are currently underway across the world with at least 4 pharmaceutical companies. Clinical trials can be a lengthy process as they need to rigorously test the drugs, first to check they are safe for use and then to see if they are effective, and monitor any side effects. These trials have been in operation since 2015.
What is the position with any approval of JAK inhibitors for the treatment of alopecia areata?
The US Food and Drug Administration (FDA) approved a JAK inhibitor on 14 June 2022, and history was made, marking the first FDA-approved treatment for the condition. The drug called Baricitinib (brand name Olumiant™) for the treatment of alopecia areata,
In addition, in September 2022 the FDA accepted a New Drug Application for a JAK inhibitor called ‘Ritlecitinib’ for adults and adolescents 12 years and older with alopecia areata. The FDA decision is expected by mid-2023. AAAF will be representing the patient voice for the JAK inhibitor drugs – Baricitinib (Eli Lilly) and Ritlecitinib (Pfizer).
So the question then comes which drug will be best suited to my form of hair loss. Baricitinib is under consultation for the treatment of severe alopecia areata in adults and Ritlecitinib is under consultation for the treatment of moderate to severe alopecia areata in people aged 12 years and over. It is unlikely that it will be offered to patients with small patches of alopecia areata. We are unclear at this point what the criteria will be in terms of what is determined as ‘severe’ or ‘moderate’ hair loss.
What are the possible side effects of taking JAKs?
Many patients do not experience side effects and those who do, rarely experience serious side effects. Many side effects become less serious and frequent over time. Some less serious side effects include nausea, indigestion, diarrhea, headaches, upper respiratory tract infection, and increased cholesterol levels.
In rare cases, more serious side effects can occur, such as infection, abnormal blood counts, abnormal liver function tests, increased risk of bowel perforation, and decrease in kidney function. Source: Creakyjoints.org
Can I get JAK inhibitor drugs for my Alopecia Areata privately?
We are aware that some people are choosing to source JAK inhibitors themselves. Because JAK inhibitors are licensed for treating rheumatoid arthritis and atopic dermatitis (eczema), some dermatologists are prepared to prescribe JAK inhibitors for patients with alopecia areata ‘off-label’. This can be at a great cost for the drugs and the price will be determined by the supplier.
The next phase is listing the JAK inhibitors for the treatment of Alopecia Areata on the PBS
To understand the work involved to get a drug listed on the Pharmaceutical Benefits Scheme (PBS) you can familiarise yourself here.
AAAF is participating in conjunction with third parties, to obtain the vital inputs into the lodgements need by the pharmaceutical companies.
It is important that anyone embarking on these treatments goes in with open eyes and realistic expectations. Whilst these JAK inhibitor drugs are a giant leap forward in the treatment of alopecia areata, they do not represent the cure that many are hoping for.
It all started when I was 17 and I had a few major life events all happen to me within a short amount of time. I was in year 12, my grandfather passed away, I contracted glandular fever and I found out then my boyfriend had cheated on me. It was a stressful time, to say the least!
I noticed a huge patch of hair at the nape of my neck missing, I was in so much shock and I had no idea what it was. I was diagnosed the next day with alopecia areata. From then until the start of 2020 the patches were tiny and manageable with steroid injections that were uncomfortable but bearable once or twice per year.
During the 2 years of lockdown, my alopecia became the worst it’s ever been. On the sides of my head had formed 2 huge patches and since then we have been trying to manage.
I’m now on prednisolone and minoxidil. I found the foundation as I felt so alone and isolated. I felt as though no one understood and if they did, as it wasn’t noticeable, it wasn’t a “big deal”. However, to me, it was a big deal and kept me up and night.
I know this treatment can keep it all under control.
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.
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
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!
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.
Hi I’m Faye, I have had alopecia since I was five years old. This is the same age I started sailing.
During this time, I have experienced small amounts of regrowth but most of the time I haven’t had any hair. Some of the time I have not had eyebrows or eyelashes. It’s really frustrating having things change all the time.
I am now fifteen and the middle of three sisters. I am the only one in the family with alopecia. Most of the time I am OK with it but it is really hard sometimes wishing I had hair. When people first meet me I know that they are wondering why I don’t have hair.
I have sailed for 10 years and competed in four National Championships in the International Optimist and International Cadet classes. I also competed in the Tasmanian Schools Teams Racing competition and last year was invited to participate in the Australian Schools Teams Racing National Title. I have also competed in several SB20 national championship events.
Sailing is a sport in which females and males compete against each other. It requires a lot of preparation and interaction amongst 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. I had to learn that my alopecia would make me feel worse if I missed out on things trying to hide it. My family and I find it a lot easier if we explain my alopecia so other people understand why I am like this, how it does not affect my ability to compete to a high standard, or my enjoyment and participation in activities. I feel like 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.
I regularly volunteer with the Sailability program at a nearby yacht club to support disabled people with their weekly sailing. I am also a junior committee member at the Sandy Bay Sailing Club and have recently completed my assistant instructor qualification. I teach and support younger children in learning sailing. My alopecia is sometimes a point of curiosity to younger children. It is something I have to be brave about when they ask questions or notice that about me. Hopefully, when they meet other people with alopecia it will help them to accept them more easily.
I am thankful for the support of AAAF to assist with coaching costs from the Sponsorship. I am training to compete in some important regattas and the sponsorship is assisting me to access more training opportunities.