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!

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.

Bianca Librandi’s Alopecia Story.

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.

I’m healing and getting better every day.

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.

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!

Tips for managing the uncertainty of Alopecia and letting go of negative thoughts around your hair loss

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 new empowering 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!

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