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 😊

Tristan’s Story.

It was the end of February 2018 after what had been a brilliant summer, I slowly noticed two or three coined shaped patches of hair on the top of my head that weren’t growing more than half a millimeter in length on my already shaved head, a style I had kept since about 2014 for the look and easy low maintenance. At the time I didn’t think much of it as the patches still contained hair, I just wasn’t sure why they weren’t growing. 

I soon visited a dermatologist who instantly diagnosed me with Alopecia Areata. While I hid any emotion after being told the news, it was a big kick in the guts as I knew alopecia already ran in my family with my Mom and her sister (my aunty) having Alopecia Universalis and also knowing from a recent genetic test, that these autoimmune problems were caused by a gene mutation found throughout my Mom’s side. I tried to stay optimistic regardless, but not long after, a few more patches began to develop as well as them increasing in size and my overall health and immune system started to decline in what would lead to an extremely tough winter and spring, that also involved losing my sister to cancer. Throughout this time I would get monthly steroid injections into the affected areas and I gradually got back on top of my health with supplementation and exercise and by December I had achieved basically full hair regrowth. 

2019 soon came and with a head full of hair (although still shaved to a short length), I was back to the old me again, full of confidence, and shortly found myself back, dating and in a relationship. I soon forgot all about my alopecia from the previous year and life carried on as normal but as the latter half of the year arrived my relationship came to an end, so I soon went on a holiday for some time off to relax where I drank more than what was good for me. Halfway through the holiday I noticed a small bald patch the shape of a coin on my head and thought “here we go again”. I was confident it would be short-lived and that I would grow back straight away as I had already beaten alopecia before. Unfortunately, I guessed wrong and within a month I had lost about 70% of the hair on my head and elsewhere on my body and sadly knew it was time to go through the entire process again of trying to regrow it.

Throughout 2020 I would be back on monthly steroid injections to the scalp and would try multiple supplements, health products and try to look after my health as best as I could. As October of 2020 arrived, I had gotten back to about 85% regrowth and was confident that I would soon beat alopecia once again, but suddenly without any clue as to why my progress started to reverse. This brought me to the worst my alopecia had ever gotten, and in early 2021, My Alopecia had reached about 96% total hair loss all over my body. I was devastated and thought about just calling it quits and learning to live with the total hair loss. But being both stubborn and always optimistic I couldn’t just leave it at that, so I made the decision in April 2021 to roll the dice and start a new JAK inhibitor medication called Baricitinib to aid in the fight. I usually tried to stay away from immune-suppressing medications with steroid injections being about the only thing previously I was willing to take, but after a lot of consideration, I decided to go through with it alongside the aid of multiple holistic approaches. At the time of writing (September 2021) I am still on my journey of living with and trying to beat Alopecia. Win or lose, I will be glad knowing I had a crack and know I’ll learn to live and be happy no matter the outcome.

Alex Alopecia Story

Alex is one of the 2021 recipients of our Sponsorship Program and we are so proud of his wonderful story! Read his alopecia story below.

Hi, my name is Alex.  I am eight years old and I have had alopecia forever (Mum says I was one when I started to lose my hair).  I used to have no hair on my head when I was two and I loved wearing beanies in winter.  My favourite beanie was a strawberry one but then we met a really nice friend who knitted me a frog beanie.  Frogs are my favourite animal so that’s my favourite beanie now.  When I had no hair, people often looked at me a lot and thought I was sick.  But I’m not sick, I just have alopecia.  

Ever since I was a little kid, I have liked figuring out how things work.  Even before I could walk, I used to like spinning the wheels on bikes, toy prams and cars and watching what happened.  I also love the sandpit and play in it for hours, building great tunnels, waterways, towers and bridges.  My Dad is an engineer and I want to be an engineer too.  When I was in kindy, my favourite thing to do was play with the water course and design channels that let me control the flow of water.  My hair started to grow back then, when I was in kindy, so I began to grow it long.  My hair is really long now and I am trying to grow it long enough to donate it to wigs for kids so kids with no hair can have long hair too.  I still have to make sure I put suncream on my patches when I go out, or wear a hat.  

I’ve always loved engineering.  That’s why I want to go to the engineering class and learn how to build the best bridges.  I think having alopecia makes me really lucky because I get to do engineering classes. One day, I’m going to be a great engineer.

Alex’s Update:

This sponsorship has come at the perfect time.  Alex is beginning to lose more and more patches and it’s quite prominent on the top of his head now.  In the past, Alex has seemingly not been affected emotionally or psychologically by his alopecia areata.  He’s always taken it in his stride and lived like it was never an issue, which I don’t think it has been for him.   But this time, it really is having an impact.  Lots more people are asking him why he’s losing his hair and he finds he’s having to explain quite frequently.  It’s also a constant reminder of what’s happening.  Alex absolutely loves his long hair and it’s tough-going right now. 

Having access to this amazing engineering program, which is the love of his life – really gives him something to focus on and look forward to.  It’s only been running two weeks but he’s already built the Sydney Harbour Bridge – pretty impressive feat!  He’s been really enjoying working alongside the small group of boys,  learning about bridge structures and how to make sure they don’t fall down.  Next week, he’ll begin building the Story Bridge – Brisbane’s own.  It’ll be great to get out and go for a bike ride under the bridge to compare the real deal to his model.

Sheridan’s Story

When I was young my hair was my pride and joy. I received so many compliments on it… I was known as the girl with the long plait.

Then one day, I felt the hairdressers cold fingers against my scalp. It felt barer and more exposed than normal. She quickly ran to my mum and I knew something was wrong. I had a bald patch about the size of a 50-cent piece. One patch at a time, the emotional roller coaster of treatments began and I grew up very quickly. I was confused, unsure, scared, I felt different and my lack of confidence penetrated many aspects of my life. I hid my hair loss with bandanas and wigs.

I began treatment, but it didn’t work.

I fell into depression, resistance and avoidance. I lost my identity, but I was unaware, insisting, everything was fine, when I knew deep down, it was not.

Overtime, my alopecia areata progressed to totalis, and most recently universalis. 

Shortly after the last hairs in my head fell out, I began to challenge myself by practising yoga. I would feel slightly nervous the entire practice until we got to the challenging pose, then I would breathe through it and feel AMAZING after. This inspired me to begin studying yoga therapy, mindset work, subconscious programming, embodiment, Jungian psychology and mindfulness techniques. 

It turns out, my self doubt and fears related to what I looked like, had little to do with the strands of hair that were (or were not) on my body, but much to do with the level of self trust and self acceptance I had inside. 

Once I could grieve the appearance I no longer had and develop self love, the confidence began to radiate through me, and I felt grounded in my feminine, powerful yet humble, ‘I-can-do-anything -and-so-can-you’ attitude. 

Now I’m so grateful to AAAF for supporting me in my meditation practice through this sponsorship. 

My Alopecia Journey – Kerri

Kerri was one of the recipients of the AAAF Sponsorship program which ran in 2019 and early 2020. She is a talented artist who put together a special exhibition about her journey with this condition titled Understanding Alopecia.

I went through a very stressful time 6 months before my hair started falling out, I never thought anything of it and kept on with life as you do. I did have a bit of hair loss, but I never really took much notice until I went to get my hair cut one day and the hair dresser told me she had found two round patches on the back of my head about the size of a twenty and ten cent piece. She suggested that I go to the doctor and said it could be alopecia, I had never heard of Alopecia before so this started a strong relationship with google researching Alopecia. This period of time was the worse as I didn’t really know what was wrong with me, the unknown and thinking it could be something worse was worrying.

Continue reading “My Alopecia Journey – Kerri”

A letter to my alopecia family

Submitted by Siarrah – You can read more about Siarrah’s journey with Alopecia Areata here.

My Alopecia journey in the last year:

Through the AAAF sponsorship program I set myself a goal to create awareness within my netball community.

I forget that I’m wearing a bandana; I forget that others might wonder why.

With the sponsorship program I found myself committed to creating awareness.

Continue reading “A letter to my alopecia family”

Ten Truths from my Alopecia Journey

80427854_10157275466804398_3913179368066646016_nMichelle Ogbonna

My Alopecia Journey began many years ago, when I was 15 years old,  in Year 10 at High School. I was in the Drama Club, and one evening as we prepared for a performance, someone styling my hair exclaimed: “Oh look , you have a little bald spot right at the back of your head !” A few people laughed, including me, and I didn’t give it much thought, as it stayed the same for about 2 years.

During Year 12,  however, a few more little patches appeared, and in the year after I left school, those few little patches became many little patches, which joined together to become big patches, and I could no longer hide them with careful styling.

I wore hats and scarves to hide my patchy scalp,  and struggled terribly with anxiety and depression.

During that time, there were many lies I told myself and believed about myself and my future.

Now,  I am  43 years old, and my life is far different than I had expected it would be. Here are 10 of those lies and 10 of the truths that have replaced them.

Continue reading “Ten Truths from my Alopecia Journey”

My Alopecia Story – Max’s Journey

I don’t exactly remember when I started to lose my hair. I know it happened around 2014, when I was about 11. I also know it started like it did for any other any kid. In patches across my head.

When it began, I honestly couldn’t have cared less. Hair wasn’t a vital organ and I wouldn’t die if I lost it, unlike some other people in my grade who certainly would have.  My alopecia then took a turn for the worse in 2017 when I was 14 and so I decided to shave my head as all my hair was going to fall out anyway. However, it didn’t bother any of my friends. After that, my eyebrows fell out and then that was it.

Continue reading “My Alopecia Story – Max’s Journey”

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