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

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

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.

Walk in my shoes, by Jo.

The word “alopecia” means hair loss. Alopecia Areata is an auto-immune disease that results in hair loss on the scalp and elsewhere on the body. It can range from small, individual smooth patches of hair loss, to total loss of all hair on the body – including ear and nose hair. Alopecia Areata is not uncommon, and current estimates suggest that 2% of the population will be affected by the condition at some point in their lifetime1. Alopecia Areata can be a lifelong condition, and can deeply affect self-image, self-esteem, confidence, and even mental health. But there is hope. Jo shares her personal and moving story.

EARLY DAYS

One day at work in July 2019, a friend asked me if I had burnt my hair with my hair straightener. She noticed a small 20 cent sized patch of missing hair. I had never noticed it. I saw my GP who referred me to a dermatologist who diagnosed me with Alopecia Areata (AA). Alopecia was definitely something I had heard of. I always assumed Alopecia was the complete loss of hair and not small circle patches.

Rapidly, that 1 small patch transformed into an AA ophiasis pattern (a unique pattern of hair loss, where the hair around the entire outside of my head fell out). Losing my hair and identity was incredibly traumatising and upsetting. I had no history of AA and prided myself on how fit, active and healthy I was. As I have now learned, AA is an autoimmune condition and can impact you at any age and health status.

Despite being a very confident person, I only told my partner, parents, and brother about my condition. I was embarrassed, fearful, and sad that I no longer looked like ‘me’ anymore. The one blessing of COVID-19 was I didn’t have to leave home and answer people’s questions about my hair.

THE BREAKTHROUGH

AA is a hard illness to sit within yourself. There is no cure and not all treatments work for everyone. Unfortunately for me, AA ophiasis pattern is very rare and also very resistant to treatment.

I feel very lucky to have a family who works in the medical field so discussing treatment options and medication came naturally. I joined AAAF (Australia Alopecia Areata Foundation) for support, read medical journal articles on new treatments, spoke to my medical team, and joined other support networks.

As a psychologist, the strategies I ask my clients to use, I had to apply to myself included deep breathing, mindfulness, grounding, self-acceptance, and rejection of traditional beauty standards. I am grateful that I know my partner and family love me no matter what. I feel that having their support also helped me to be brave. There were lots of nights I laid awake feeling anxious and wondering “what if I lose all my hair?” “what if I am like this forever?”.

After 2 years of treatment which included- painful injections, an intense steroid medication, and very expensive autoimmune suppressant medication, I have had some hair re-growth. In April 2021, I relapsed and some new patches formed with incredibly rapid hair loss.

I also started wearing wigs which was another journey in itself. The anxiety of “what if people notice I am wearing a wig and ask me about it?” is huge and one I still have not faced. Other than my family, I have told no one I wear a wig. I still haven’t come to terms with that in myself.

In this picture of me, I was in “remission” and only had small patches easy to cover with my long hair sections. Flares and recurrence can happen at any time, so this disease never leaves me completely and I need to manage my way through the ups and downs.

REFERENCE

AND TODAY

The financial burden I have carried from multiple treatments, expensive medication, and wigs (none is subsidised) is approximately $15,000 to date. I was fortunate that I have good health literacy, family support, and financial stability to try to fight my AA.

Today I have done a lot of work to accept AA in myself and what it means for me moving forwards. In the morning I take my medication, put my wig on and go about my day as a psychologist. I have to see my dermatologist regularly to manage my hair loss. I often remind myself that AA is not my fault and I did not choose this. I have made peace with my condition and know my worth is not defined by my hair or lack thereof.

1. Australia Alopecia Areata Foundation. About Alopecia Areata. About Alopecia Areata | Australia Alopecia Areata Foundation (aaaf.org.au). Accessed 20/01/2022

Christine’s Story (3 months check-in).

Since making exercise a priority I’ve noticed changes in my mental health. I try to exercise most days, and this helps me feel strong physically and mentally, it releases stress and produces endorphins leaving me feeling happier and giving me more energy. When I feel good mentally, I cope with my alopecia better. If I don’t exercise for a few days, I feel tired, flat, and have low self-esteem. Self-deprecating phrases and words enter my mind, and it is hard to ward them away. 

Since commencing regular exercise and making it a daily priority I’ve realised I enjoy a challenge. I often shied away from challenging feelings and circumstances, thinking if I didn’t face these things life might be easier. However, the more I exercise and the stronger I feel, I have greater clarity in my mind allowing me to reframe my thinking about challenges. 

Three months ago I was lucky to be awarded a sponsorship with the Australian Alopecia Areata Foundation (AAAF) and it has helped fund my training and given me an extra boost to dig deep with my commitment to exercise. As a result, two months ago I decided to sign up for my first annual challenge that Mum’s On A Mission (MOAM) hosts. I’ve been a member of MOAM for a few years now, attending their exercise classes regularly. However, I had never previously joined the annual challenges they host due to fear. Fear of failing, fear of letting people down, fear of letting myself down, fear of letting people in, fear of people learning I had alopecia and that they might see and think of me differently. The 8-week challenge this year was aptly named “The Breakthrough” and it certainly lived up to its name. It involved 8 weeks of education sessions on training styles, nutrition, heart rate zones, recovery, and facing your fears. We also had to complete weekly exercise challenges like stair climbs, bolt push-ups, inchworms, frog squats, planks, and splits. All of this is done in teams of 3 people. 

I dedicated the 8 weeks, alongside my teammates, to facing my fears. I faced each week’s challenges, digging deep to learn and understand why I had been fearful of certain things and what might happen if I decided to acknowledge these fears and stand up to them. I’ve cried, I’ve had injuries, I’ve had successes and failures. I made new friendships and I faced my fears. I feel proud and I feel good. Yes, I have alopecia, yes, I wear a wig when I train, yes, I feel self-conscious about it, but that is ok. Vulnerability is ok. And from consciously accepting vulnerability, awareness emerged. And from awareness, I was able to work on building strength and self-acceptance within myself.

I feel grateful to AAAF for providing me with this opportunity to push myself out of my comfort zone. I’ve pushed myself to train more, sign up for the 8-week challenge, and speak about my alopecia. I don’t shout it from the rooftops, but I don’t shy away from it anymore. I welcome questions people have about alopecia and questions about my experience with it. I use it as an opportunity to create awareness of the disease, provide information and clarity on what it means, and share my experience. I am not sick. I’m not sure if my hair will ever grow back. I am ok with having alopecia. Please don’t feel shy about asking me about it because I’m no longer shy about talking about it.

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