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.

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.  

My Alopecia Story – Lilly Cowley.

My name is Lilly Cowley. I am 13 years old and I have Alopecia

I have had Alopecia since I was 7. I remember that at the time it was very confusing. I didn’t understand why it was happening to me and I hated all the questions that I would get asked. The most common was, “Why did you shave off your eyebrows?” To me, this was a stupid question because why would any 7-year-old shave off their eyebrows? The first hair loss I had was my eyelashes and very shortly after, my eyebrows fell out. It was weird to have no facial hair. 

The uniqueness of Alopecia and the lack of knowledge have made explaining things to people very difficult. Kids can be cruel and adults can make things uncomfortable. I would love people to better understand what Alopecia is and how it affects people. 

Now that I am older and have had Alopecia for 6 years, I can handle situations confidently and with information. My eyebrows have grown back but my eyelashes kind of come and go. I don’t think in 6 years I have ever had a full set of eyelashes though. Maybe one day I will try extensions or other alternatives but for now, I embrace my unique qualities.

My family have been amazing as we have all had to go on this adventure together. My Mum is my number one supporter and without her encouragement, I may not have the resilience and determination that I do today. My Dad and brother are amazing as well. I love them so much!

My biggest passion is swimming. I love the rush of competing in big events, being part of a team and the support from my Coach, Kirk. My Club is Saints Swimming Club and it is in Cairns QLD.  I have tried other sports over the years like BMX, dance and netball, however, swimming has always been my first choice. I have recently done my first open water competition and really enjoyed it. 

It is because of the sponsorship from Australia Alopecia Areata Foundation (AAAF) that is making it possible for me to continue doing something that I love so much. It gives me the confidence to achieve amazing things. I know that I am special along with the other 1% of Australians that have Alopecia. We are not different or weird, we are UNIQUE!

Thank you for this huge opportunity and I know that it is helping my family a lot.  

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 

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.

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

Website Powered by WordPress.com.

Up ↑