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.  

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

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

Alopecia is a life-changing event that causes a lot of unknowns to enter into our life. Since this can feel scary, a normal response to this is for the brain to focus on the negative aspects about all of this new uncertainty.

However, these negative thought patterns can take up a lot of our energy and, ultimately, don’t change the fact that we are still experiencing hair loss and all the unknowns that come with it. Negative thoughts can eventually lead to us feeling tired, stuck and low on self-confidence.

Once we can release these negative thoughts we can begin to experience more acceptance of the uncertainty and hair loss journey as a whole.

Here are 5 tips to breaking the pattern of negativity so you can begin feeling more acceptance, confidence and ease in your experiences.

1. Notice the thought

Simply notice that you had a negative thought, without judging yourself or pushing it away.

2. Recognise the emotion(s) that come with the negative thought

Notice what emotion(s) show up when you have the thought.

Example: “I’m going to feel weird if they know about my hair loss.” One emotion that could come up from this thought is shame.

3. Process the emotion through the body

Do some movement (like dancing, exercising or yoga) or a self-care practice, like journaling, which will help to move the emotion through you.

4. Banish the thought

You can use language like: “I banish you”, “You are no longer welcome here”, “You no longer serve me and I release you now.”

5. Create a new empowering thought

Replace the negative thought with something that feels positive and empowering.

Example: Instead of “They are going to shame me when they find out about my hair loss” replace it with “They are going to be inspired when they hear about my hair loss” or “I’m going to feel relief when they know about my hair”

Choose a thought that feels true for you. This may feel hard at first, but the trick is to keep practicing. Over time, you will be able to create new thought patterns!

One of our very own AAAF community members, Sheridan Ruth – a yoga therapist, meditation facilitator, and empowerment coach – created a video outlining these 5 steps in more depth. Watch it here!

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.

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.

Emma’s Alopecia Story

Hi, my name is Emma, and I was diagnosed with Alopecia Areata just before my 14th 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 1/8th 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.

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.

Website Powered by WordPress.com.

Up ↑