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. 

JAKs – Where are we now and where might we be heading?

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.

Managing Expectations?

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.

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.

Charlie’s Alopecia Story.

I am nine years old and was diagnosed with Alopecia Areata in kindergarten at the age of five. 

From the age of five to seven, I had small patches of hair that would fall out and regrow with the compound treatment of DCP.  

At the age of eight and during the lockdown of Covid-19 slowly all my hair fell out. 

With my family’s support and the treatment of Tofacitinib Tablets from my dermatologist, my hair is slowly growing (with minor patches still falling out). 

Even though my body attacks my hair, I don’t feel it changes who I am and I still have the confidence to continue my days at school, playing with friends and participating in activities such as cheerleading, swimming and horse riding. 

Some days I wear a colourful headpiece, other days I choose one of my many colourful hats. I do have a wig to wear “just in case”. However, most days, especially around my family and friends, I choose not to cover up my alopecia and embrace who I am.

I recently joined the Alopecia support group and have been to a couple of the catch-ups close to home. I have met a lot of people like me, this has helped me feel more comfortable with having alopecia and has also helped my family with support by joining the alopecia community. 

I have been given the extraordinary opportunity to have private horse riding lessons thanks to the sponsorship of the Australia Alopecia Areata Foundation. This has helped me work on technique and has also helped with my confidence and keeps my mind healthy.  When I am older I hope to help and show other kids with alopecia that they can still be themselves and follow their dreams.

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