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.

Ava Lambie – My Alopecia Story

Hello, my name is Ava. I am 11 years old and from the Gold Coast. In 2020 I was diagnosed with Alopecia Areata. I felt scared and lonely. I went through several treatments like Clobex which is a type of shampoo. In my thoughts, it did not do anything but make it worse by tangling my hair so when I brushed it pulled more out. I then started another treatment called DCP which is a cream that stops my immune system from attacking my hair. The treatment seemed to work and my hair regrew.  

I went to an Alopecia support group lunch at Harbour Town Shopping Centre and met some really nice people with Alopecia. I felt supported and like I wasn’t alone anymore.  

I decided I wanted to raise money for the AAAF. I made a lemonade stand at my house and my Mum made a Facebook Go Fund Me page. I raised around $1200 which was mind-blowing.  

I went to the Alopecia Camp on the Sunshine Coast in 2021. I met so many new girls and boys with my condition. I felt happy and uplifted when I made new friends and it was just the time of my life, I didn’t feel alone anymore and I was able to be myself. 

After I thought the Alopecia was all gone it came back again this year. I began to lose hair again, most of my eyelashes on my left and some of my eyebrows. I felt insecure and heartbroken. I have tried the DCP cream again and had no luck so far, the doctors put stronger ingredients in the cream to stop it. I also have low iron; it does not help with my daily life as I struggle in class to stay awake and it is difficult to do everyday tasks. Low iron also makes your hair weak and it falls out a bit.  

Since I have had Alopecia, I have been bullied on a few occasions. I was asked all the time what had happened to me or if I had cancer. There was this boy who was just nasty to everyone except to his friends.

I believe that there are always bullies in our lives no matter if we’re tall, small, thin, wide, pretty or ugly. 

I am so excited about this upcoming camp in Sydney, I can’t wait to catch a flight with all of my new friends and hang out again. The only bad thing is I have to wake up at like 4:00am which sucks because I am not a morning person.  

I recently started Silks; it was like a dream come true watching all of the older girls do cool tricks. I am so grateful that the AAAF is helping me with my dream by sponsoring me. It’s just so kind of you and I will strive to do my best and show you my progress. 

Thanks again 

Ava Lambie 

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!

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

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.

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.

Thank you to our Corporate Supporters! 

AAAF recently contacted some of our corporate supporters who we love working with and asked them about their experience with AAAF. Below you can find more about their experience and their business. 

Company Title: SMP- HQ Premier Scalp Micropigmentation clinic.

I am associated with AAAF as I want to promote scalp micro-pigmentation as an affordable, accessible, and modern option for people with alopecia, as it provides a cosmetic solution to areas of hair loss, giving the appearance of a full head of hair.  

I have had multiple clients and inquiries from people with alopecia who are connected to AAAF which helps my business reach out to people who might be considering cosmetic options for their alopecia. Scalp micro pigmentation works well on everyone, not just men, as many often assume.

I first heard about AAAF during my scalp micro-pigmentation training in Los Angeles. The company that I trained with are ambassadors for the National Alopecia Areata Foundation in the USA. When I came back to Australia, I searched for a similar organisation which led me to reach out to AAAF!

Instagram: https://www.instagram.com/smp_hq/?hl=en

Facebook: https://www.facebook.com/smphqmelbourne/

TikTok: https://www.tiktok.com/@smphqmelbourne

LinkedIn: https://au.linkedin.com/in/ryan-anderson-smphq

Hair ware Fashion Wigs

We are associated with AAAF because we believe working together gives a greater connection to people going through alopecia.  AAAF is very important to our business as it connects people to us and lets them know that they’re not alone during this time and that there is help out there.

We heard about AAAF about 7 years ago through our clientele going through alopecia.

AAAF can support us and people going through alopecia by letting them know that we are in the southeast area and we have the knowledge, care, and hair ware to give them their confidence back and feel good within themselves.

We love to support people going through alopecia by offering our services and high-quality headwear at a low cost to them,  we don’t believe in looking good should cost a lot.

Facebook: https://www.facebook.com/profile.php?id=100047710815567

Web Page: https://hairwarefashion.business.site

Lena’s phone number: 0400108292 

Wigs on Wheels 

Wigs On Wheels has been associated with the AAAF since our very early days.  Our mobile wig service has been around for 17 years now. I remember we had been approached to have a stand at an AAAF workshop day where ladies with alopecia could come and connect with other people and see and/or try on the latest products that were available at the time like wigs, hairpieces, headwear, scarves, eyebrows, etc.  

It was a great day that we all enjoyed and I think it was from that day that we decided we wanted to contribute towards helping the Foundation, thus our donation, knowing it would be put to good use.

We’ve used the foundation when it has had grants on offer to help our AA ladies – especially the ones we know that are struggling financially.  We’ve also referred them to the AAAF so they can connect with other women facing the same challenges.  A support network is so important for these women – that’s how they find out that they’re not alone, and also what options are out there and that there are actually options.  Because we only provide our wig service to women facing hair loss, we get to see just how many women are out there dealing with the same situation. It’s comforting to know you’re not alone. 

The AAAF supports us as we do it – by referring women to us who want to find out more about their wig, and hairpiece options. We are always happy just to chat about their options (knowledge is power) and then it’s up to them as to whether they wish to take the next step and make an appointment. 

Wigs On Wheels provides a discreet wig service to the home. Depending on where you are located, your health fund may cover you for some or all of the wig – contact them to find out more.

Web Page: www.wigsonwheels.com.au

The Wig Lady 

I have been a member of AAAF for years because I have Alopecia Totalis!

I get a lot of support because they support me on their list of wig suppliers. When new clients come to me with Alopecia I always suggest they contact our group.

Facebook: https://www.facebook.com/WIGS4UPERTH

Instagram: https://www.instagram.com/wigs4uperth/

Web Page: https://www.wigs4uperth.com 

My Walkers Wiggery 

I have decided to specialise in making wigs for people who live with Alopecia, as it is such a widespread issue that rarely gets acknowledged for the impact it can have on suffers. Coming from a hairdressing background I have worked with many clients over the years who have suffered from Alopecia and I know the positive effect a good wig or topper can make on how a sufferer feels about themselves.

Being associated with AAAF allows more sufferers of Alopecia to access the kind of wigs and toppers that I make.

By helping to promote my business to alopecia suffers both locally and nationally.

Instagram: https://www.instagram.com/mrwalkerswiggery/
Facebook: https://www.facebook.com/mrwalkerswiggery

CRLAB Australia 

Whilst we offer solutions and treatments for all types of hair loss alopecia makes up a large percentage of our clientele.

Many of our clients have gained valuable information and guidance from your network and contacted us for our products and services. 

We first heard of AAAF through a client and informing your network of what we offer (CNC non-surgical hair replacement) would allow us to serve more clients who seek alternative hair solutions.  

Instagram: https://www.instagram.com/crlabaus/
Instagram (sister company): https://www.instagram.com/carlalawsonhairextensions/
Web Page: https://crlab.com.au

Brigette’s Story.

My name is Brigette Lucas, I am 34 years young and I have an autoimmune condition called Alopecia Areata.

My friend in High School noticed that I always had hair collecting on my jumper, like the way a cat or dog’s hair always sticks to your clothes, but in my case, it was my human bio hair sticking to my school jumper. I didn’t think much of it at the time; I had so much hair that a little shedding was okay.

It wasn’t until I was 19 years old, after completing High School and when I’d moved from Rural NSW to Sydney, that my hair rapidly started to thin on my head. I found it hard to cover the hair loss and although social media existed, we didn’t have these little pockets of life where women with hairloss existed and shared their wig reviews, or head scarf tutorials, or just someone else existed with Alopecia. I had no friends losing hair, I talked with my Doc and we got a consultation booked with a Dermatologist.

I was diagnosed with Alopecia Areata.

At the time I didn’t even know what that meant… I was, or felt, very alone, scared and confused. I remember asking the doctor to write the word down because I thought he was using Dr lingo or Latin.

My journey has been long and it hasn’t been a quick, “I’m okay now” not for me, or for anyone just joining this community. I’ve grown with Alopecia. I used to feel that it took my identity and that it defined me… but now I think it’s just an aspect of me.

I like to remind myself that I am more than my hair loss; I’m more than my wig, or my turban, or my balding head and you are too.

So with years of learning, the hurt, the anger, the sadness, the why me?… I’ve decided to let it all go. It crops up every now and then and catches me off guard. I cry about it. Talk to friends about it and then return to letting it go as best as I can.

I’ve found that with my body getting older, it hurts in places… I know I’m only 34 years young, remember? But I’ve decided to take up physical activity to alleviate some of the pain. I’ve started pilates. It has so many elements of dance, which is something I did as a young girl. My body is really excited for the challenge and to be moving again.

I can’t wait to feel good in my bones.

Talk to you all soon about it

Brigette Lucas Xx

Bren’s Alopecia Story.

Bren is a biologist that has lived most of her life with alopecia. She started losing her hair when she was five years old, all while she was going through a very rough moment with her family, but even when that was over, the hair loss was not. Bren tells us a bit about her journey; wigs, revealing her hair loss to coworkers, love, acceptance, and more.

This is Bren’s alopecia story.

Victoria Gandera’s story and sponsorship.

When my Mum first told me that I had gotten the scholarship for my music learning I was so happy, and I was filled with excitement. This scholarship really helped me with my music learning this year because now I can do my singing exam for grades 3 and 4.

In the year 2020, during the first months of the pandemic, I started learning to sing and that was when I had my first Zoom lessons. When I sing, I can relax, and I feel like I don’t need to stress about anything and everything.

I really enjoy singing because I can increase my skills and my techniques to get better and better. I really love singing and I put in a lot of practice to get good at this skill. When I look back at videos of me singing my first ever song I’ve learned, I feel like I have improved so much since then and that all my skills and techniques that I have kept in mind, have helped me get my singing to be much better and well. I am so glad I have gotten that scholarship. My life wouldn’t be the same without music and singing.

The only reason I can do the two grades is the money from the scholarship, which has helped me with my lessons and has made it so that I could learn so much more. When I sing, I can just enjoy the moment.

My mum recorded my performance at the recital, which was organised really quickly. We have helped to prepare to program with the AAAF logo on it and we did those cute tickets, that said that everyone was VIP at our recital. It was the best day and even though I was a bit anxious at the beginning, I enjoyed it a lot.

Just like Victoria, we support many others through their journeys and we help them achieve their dreams. You can find more details about our sponsorships all through our webpage and social media.

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