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.

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

Airlie’s Alopecia Story.

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

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

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

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

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

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

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

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.

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.

Alex’s Sponsorship Update 2

My Bridgeneering lessons are finished and it was really really super great.  There was nothing about it that I didn’t like – the whole thing was the best.  If I could make one of the bridges in real life, I would make the Tower Bridge.  It’s a bascule and suspension bridge.  That means it has parts that go up and down like a drawbridge.  I also made the Story Bridge that’s a cantilever bridge; the Sydney Harbour Bridge which is an arch bridge; and a beam bridge.  I think the bridge we go over to Redcliffe is a beam bridge – it’s long and flat.

For the beam bridge, it was so long it went from one wall of the classroom to the other and the whole class worked on it together.  For the other bridges, we worked in pairs.  Everyone there was really kind and funny and everyone just love building bridges so we all worked really well together.  We all liked the same things as each other so everyone got on really well.

My favourite person was the teacher, Justin.  He knows so many interesting things and I just love learning from him.

When I grow up I want to design and build bridges but I also want to do all the other types of engineering too!  Thanks AAAF for sending me to Bridgeneering!

Advice from the community

Hello, dear Alopecia family. We have spent some time collecting advice from our beloved community, so you could access our ultimate compilation of advice.

Some advice has been edited to allow us to feature each person and to create an enjoyable reading:

Be proud of yourself and everything about you including your bald head, but cover it up when in the sun or when cold. It’s ok to hide if you need privacy or aren’t up for having your uniqueness on display at that moment.

Alana

There is always someone worse off than you. You have people who love you and you can achieve anything you want. I remember as a little girl my prayers weren’t for me but, they were for people worse off. In the long run, it’s devastating not having hair, but it’s only hair.

-Claudia

Never hide, you will only hurt yourself by pretending you’re something you’re not. I’m not saying don’t wear wigs; do what makes you comfortable, but don’t be ashamed or embarrassed, genuine people will be kind and the others don’t matter.

-Chloe

Acceptance is the key to living a happy, healthy, and fulfilling life.

Acceptance is gained differently for different individuals. Some learn peace through yoga and meditation, some need friends and family support, and others may benefit from counseling.

-Linda

My advice to anyone living with Alopecia is to be open about it. The amount of
people who have told me about their alopecia or a family member because I
openly talking about my wigs or because I take them off in front of people has amazed me.
The more open you can be, the more you will find yourself comfortable with
your own hair situation and inspire others to open up.

-Corinne

Be Bold,
Be Bald,
We are all different and that is beautiful.
Please accept yourself and remember your awesomeness regardless.
Learn to love yourself and follow your dreams.
Smile and be happy.

– Pauline

Learn to love yourself as you are and talk about how you are feeling. It may take time to come to terms with your alopecia, and some days you may feel sorry for yourself, but that’s ok. Above all, remember your hair loss does not dictate how you can approach life. Breathe, relax and share in all the beauty around you.

-Bridgette

Practice kindness to yourself, celebrate your differences and uniqueness. Surround yourself a positive, inclusive and supportive community. Acknowledge feelings, don’t try to hide from them. You are beautiful, you are strong and you’ve got this

– Zoe

Do what you feel is right for you and believe in yourself.

– Airlee

Wake up each morning and know that you are beautiful with or without hair.

-Sienna

Own it, take the power from anyone who tries to put you down, because bald is beautiful.

-Kayla

Smile at everyone you meet, then you will always be beautiful

-Michelle

Improve what you can change and learn to accept what you can’t.
You only live once, make the most of it!

-Anne.

Accept that some days you will feel fine with no hair, others you will feel freaky.
Focus on the positives whenever you can – no waxing, shaving, hair removal cream, no hairdressing salons (I use to hate reading magazines and doing a small talk at the hairdressers – haha) no grey hair, a 5 min shower, and the ability to change your style and color at any time!
Have your explanation, and various versions of it ready, so you are comfortable when other people mention your wig or no hair. (Have a version for kids, work colleagues, friends, etc
I used to worry about upsetting people, making them feel awkward when they find out I have no hair…

– Don’t –

Just explain it confidently and that puts them and you at ease.

-Helen

The first thing you are going to need is a strong support system. It is a rough emotional ride and there’s, unfortunately, no book out yet called “So you’ve just been diagnosed with Alopecia”. You may want to isolate yourself but what you need to do is find other people who have this condition and take your Mum or a trusted Best Friend with you. Find a support group in your town or city or start chatting online.
Start slow and try to learn as much as you can about different types of eyebrow wigs, eyelashes, eyelashes, tattoos, and wigs as there are many styles such as monofilament, human, synthetic, virgin, suction, etc! You may decide you don’t want to replicate what you looked like previously and are happy to be bold and brave and out there.

Being in denial is also unhelpful for your wellbeing; blocking out your condition and how you feel about it with any substances is going to do a lot of damage in the long run and it probably won’t help you to grow your hair back.

Be prepared for the unexpected when you tell someone special because others’ reactions can really impact your mental health.

In hindsight, what I can tell you now, is that it’s important to get to a point of acceptance as quickly and as healthily as you can. This happened to you but it doesn’t have to define you. Find out what makes you happy and continue to do those things with people you love. For me, it’s going fishing on the beach, and I sure could use a hat with hair for that!

-Tamara

Photos taken from our 2021 camps.

Access the PDF on advice from the community here.

View the advice slideshow below:

Corinne’s Alopecia Story.

My name is Corinne Scullie, I am 37 years old and I am currently suffering from Alopecia Universalis.

My journey with alopecia began when I was in primary school and I started losing patches of my hair. Alopecia was something my mum already had experienced herself so we knew what it was straight away. I recall trying different things at the time to try and help but eventually it all fell out. The biggest thing I remember about this time was that most people assumed I had cancer and that not many people knew what alopecia was.

At school I was allowed to wear whatever hats I wanted inside the classroom as well as outside and I thought this was awesome because everyone else had to wear the dorky school hats. During this time, I continued to play Netball and participated in Calisthenics. My hair grew back quite quickly and over this period I never wore any wigs.

Since then I would get the occasional patch over the years but it wasn’t until 2014 that it really started to disappear again. This time, I lost all my hair and eventually my eyebrows, eyelashes and body hair disappeared too. Because alopecia was something I had grown up with (my mum continued to have it come and go over the years and one of my younger sisters also lost her hair) I found it a lot easier to accept than most.

I started buying wigs and named my first one ‘Big Red’ (because it was a long red wig) and we had a lot of fun together. I have never shied away from the fact that I have alopecia but once my kids got to a certain age, I had to begin to factor in their comfort levels as well as my own. Slowly, their friends became aware. My son, in particular, found it funny to pull my wig off and say “my Mum’s bald!”.

Given I have a bit of a collection of different wigs, it also has become fun for kids (and sometimes the adults) to try them on. When explaining to younger kids I often say I have magic hair that can come off and go back on – sometimes it changes colour too. Its quite funny to then see them try and take their hair off too.

After several years of attending my daughter’s calisthenics competitions and concerts I started to want to get involved again myself. She was around 6 at this time and wasn’t keen for me to join and I think part of this was the fact that I would be on stage in front of people without hair. I gave her another year before raising the subject again and she was not thrilled, but my husband made her come around to the idea.

Joining the Masters team of Bendigo Calisthenics Club has been the best for my self-confidence. I have made new friends and helped spread some awareness within the club about Alopecia. Receiving this funding grant has allowed me to continue this year and will also give me a platform to spread further awareness throughout the calisthenics community.

Thanks to the Australian Alopecia Areata Foundation (AAAF), for funding my return to Calisthenics and for helping me spread awareness about Alopecia!

Emma’s Alopecia Story.

My name is Kylie and I am Emma’s Mum. Emma was diagnosed with Alopecia during the first lockdown in SA, in March 2019.

It all started with some of Emma’s hair on her head falling out in big patches.  Then it slowly progressed to her eyebrows, eyelashes, and all of her hair on her head, arms and legs.

We had trouble getting Emma into seeing a specialist and dermatologist at the time of the hair loss due to the COVID 19 outbreak and many doctors were not taking patients from the Barossa which is where we live, due to the cluster in Tanunda (the tourists from the American Cruise Ship).

When Emma returned to school after the COVID lockdown, she had lost a lot of her hair and wanted to wear a hat to school.  I emailed all of Emma’s school friends to advise them of the situation and to let them know Emma may look a bit different and all her friends wore a hat or beanie to Emma’s first day back at school.

Emma is a resilient and strong girl and has handled what life has thrown at her health wise with strength and dignity.  She amazes me every day and I feel privileged to be her Mum.

The funding we have received from the foundation has been amazing and has helped Emma continue her passion for Gymnastics.   This activity gives her so much confidence and he shas progressed to the Performance Team in her gymnastics group and continues to improve and practices daily at home.

We would like to thank the Australian Alopecia Areata Foundation (AAAF) for helping and sponsoring Emma 😊

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