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.

Airlee’s Scholarship Update.

I would like to thank the AAAF for my gold scholarship! This scholarship has paid for my dance classes which are tap, musical theatre and contemporary dance private lessons. Thanks to these, I have improved so much that two months ago I was asked to join the performance team, which means I can now compete in different tournaments starting in August. I got an email last week from the dance studio saying that all the Teachers are so impressed with my dedication and improvement, so I had been selected for the Elite team. This is a dream come true!

At the midyear dance concert, I performed solo on stage. I had never danced by myself before on stage, but I absolutely loved it! When I am on stage, I can forget about everything, dancing is my happy place. 

My favourite days of the week are the days I have dancing in the afternoon. A few years ago, when I lost all my hair during the lockdown, I wouldn’t even go to the mailbox as I didn’t want people to see me and I was so upset, but now, I dance without a wig. I even like that I don’t have to worry about hair getting into my face when dancing.

I am proud of who I am, and my confidence has grown so much through dancing.  I can’t thank the AAAF enough!

Victoria Gandera’s Story Update.

It has been three months since I received the scholarship so here is my update.

It has been a tough couple of months health-wise but hopefully, things will get better now.

This AAAF scholarship has helped me a lot in so many ways. 

To begin with, it helped with my music studies this year. I have learned many new singing techniques to help with my breathing and for holding notes longer. One of these techniques is called the iron gate. This is for when I am doing my counting vocal exercise. It helps save the air that you have in your diaphragm. When you are using the iron gate technique, you say a number, and then you lock all the air back up by closing your mouth.

The other way it helped me is that now I’m able to have more time in the studio with my teacher.

Thanks to that I am able to learn harder songs for my exams now. I have been learning some amazing songs by various artists and from various genres. Some of them are by ABBA, some from musicals, and I have also learned some rock songs by Avril Lavigne and classics by Olivia Newton-John. 

These songs are all part of my preparation for my grade 3 vocal exam, which will be coming soon. I will also be doing another grade at the end of the year which wouldn’t be possible if not for the scholarship – so thank you AAAF for allowing me to have that.

But the biggest benefit to all this is how much I have improved not only in singing but also in how much more focused I am. It is a lot of work to prepare for exams and I had to learn to manage my time better to fit it all in.

I am more focused, but also happier. Singing makes me happy and forget about the little troubles or snarky comments from kids at school about my hair. So I really hope I’ll be able to keep singing for more years to come.

Hopefully, on my next check-in, I can share the results from my vocal performance exam with you all!

Katie Hale Alopecia Story.

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

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

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

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

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

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

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

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

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

Faye’s Alopecia Story.

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.

Michelle Law’s Story.

When I was diagnosed with alopecia areata at age 13, it was a very sudden life shift. I went from having long, thick hair to being bald within a couple of months, which made navigating high school particularly tricky. Developing alopecia at that formative age impacted my identity, and self-esteem, and instilled a lot of anxiety around social activities and sports.  

Now, I’m 32 and my alopecia has shifted and changed over the years, as it tends to do! I’ve had my hair grow back completely, then become sparse and patchy, to then growing back and falling out all over again. The past decade has been more consistent; right now I’m bald and have lost my eyebrows. Along the way I’ve tried many different treatments – from steroids to T-Cell inhibitors – that have been successful to varying degrees. With age, I’ve come to peace with how unpredictable alopecia is, and don’t take any medication for it. 

Having alopecia has definitely influenced my worldview, which in turn has influenced my working life. Personally, it’s taught me to develop a great sense of humour, to remember that beauty is skin deep, and to have greater sympathy for others and their internal struggles. Professionally, it’s inspired speeches about alopecia and TV projects like my SBS series, Homecoming Queens. 

I think having alopecia teaches you to be resilient, adaptive, and fearless. It’s also an ever-evolving journey. There are days when I love having alopecia (drying off after the shower is so easy!), where I miss having hair (winter is freezing!), and sometimes find it utterly exhausting (having to explain what alopecia is to new people). It’s been amazing having more public figures speaking about their alopecia, but there’s still a long way to go.

I’m excited to create more visibility and conversations around alopecia through the AAAF’s sponsorship program. I’ll be undertaking six months of horse-riding lessons, something I’ve always wanted to do. Horse-riding can be such a peaceful yet powerful experience, and horses are such empathetic creatures. I’m looking forward to the new life skills I’ll pick up along the way and can’t wait to keep everyone posted.

Airlie’s Alopecia Story.

When I was four years old I started losing my hair in patches. My mum took me to the Dermatologist and I was told I had Alopecia Areata. I was given some DCP ointment which made the hair grow back.

When I was 8 my hair started falling out again, we went back to the dermatologist and were told to apply the ointment again, but this time I had a severe allergic reaction. We were going into lockdown because of Covid so was told it was too risky to start on an immune suppressant.

During homeschooling, I lost all of my hair everywhere and was told I had Alopecia Universalis. I was so worried about what people would think of me, that I didn’t want to go back to school or dancing. When it was time to go back to school, I got a synthetic wig. It was so itchy and hot.  I was worried about it falling off when I moved around. My teacher helped me create a Youtube video letting the school know all about Alopecia and in it, I said: “I’m not sick, I don’t have cancer, It’s just Airlie, with no hair”.

I started off taking my wig during class time because I was getting too hot and found it hard to concentrate, I then took off my wig during playtime where I wore my school hat instead, and eventually worked up the courage to take the wig off during assembly in front of the whole school! 

I showed the Youtube video to my dance school too, I got the courage to take my wig off during dance classes then at the end of year concert I didn’t wear a wig.

I spent eight months on immune suppressants that made me feel sick and tired and I absolutely hated the blood test at first because I was not used to them, my hair didn’t grow back during the eight months, so I decided to stop the medication as feeling sick was worse than not having hair.

Once everyone knew about my Alopecia, I felt so much better. I am proud of the person I have become, and I no longer care about not having hair as this is the new me!

Emma’s Alopecia Story

Hi, my name is Emma, and I was diagnosed with Alopecia Areata just before my 14^th birthday.

My hair had always been perfect until one morning I woke up and got in the car to drive to school and mum asked me what I had done with my hair. At this stage, it was no more than about 5mm of hair missing from the front of my hairline. The next day it was even bigger, about the size of a 20-cent coin. This is when we decided to book an appointment with the dermatologists. We were extremely lucky, and it turned out they had a cancelation that week.

It was 5 days after the initial piece of hair fell out when I was diagnosed with Alopecia Areata. By this point, I had already lost about a 1/8^th of my hair.

We instantly started steroid injections into my scalp, and they started to work. Over the course of about two weeks, I continued to lose hair rapidly until over a quarter of my head was bald and my hair had thinned drastically. At this point, we were told that I was most likely going to lose all my hair and that we should start looking into wigs.

One week later, I shaved what was left of my hair and donated it to help others with alopecia.

My hair loss slowed right down, and it eventually stopped. After a few months, I had some hair regrowth on my head. When things finally looked like they were getting better I suddenly lost all my eyebrows over a period of 3 days. This was exceptionally traumatic. We turned to henna to create the illusions of eyebrows for a few months before they eventually began to grow back. While I still have bald patches on both my head and my eyebrows, I have hope that one day they might grow back.

Emma is a very talented dancer that has been training for most of her life. She also is one of our recipients of the AAAF gold level Sponsorship Program which has allowed her to pursue her dancing. For more information about the sponsorship program click here.