I was diagnosed with alopecia at 7 and a half during a pandemic lockdown. This meant we couldn’t see doctors in person immediately, but we got there eventually.
My hair started to go in a couple of little patches on the back of my head but then I started to lose it on the top of my head too. My hairline is getting higher and higher and the hair that is left is thin and still going day by day. I don’t have eyelashes or eyebrows and no hair on my arms or legs! My skin is super soft though!
Seeing my hair suddenly start falling out was a shock at first but at the same time I was still healthy, and my parents told me that none of this was my fault.
People describe me as a Happy-go-lucky type of girl and say I’m such a chilled-out kid.
I loved to wear bucket hats before I got alopecia but now, I love them even more. I wear them because I like how they look. I don’t feel like I need to cover my head and I don’t really want to wear a wig.
My close friends are so kind and don’t care either.
I love hanging out with my friends, doing Taekwondo, Hip Hop dancing, playing with my dog and spending time at the beach.
It’s the 20th of September 2022 and I want to tell you about my progress at taekwondo. There’s good news and there’s disappointing news, but mostly good.
Since the last week of July, I’ve successfully attained 2 of the 5 tags necessary to be able to grade for my black belt. I have been keeping up my weekly attendance at ATI Martial Arts Joondalup and getting new foot and shin guards.
The disappointing news is that I’ve been unwell a few times over the past 2 months and it’s meant I had to miss some of my classes, so I was unable to gain any of the 3 additional tags I needed for this Thursday’s grading. Yes, we grade…even on public holidays, may the Queen’s soul rest in peace. Then, sadly, I got the flu on my birthday 2 days ago and it’s preventing me from being at the grading even as a spectator, so it just means I’ll be working twice as hard once I’m fully recovered to earn those 3 coloured tips to put on my current red with black stripe belt.
In one class, I accidentally put my belt on inside out and it looked like it was a red belt (without the black stripe) so my instructor reminded me to wear it correctly, otherwise, I was dropping down a belt without even realising…attention to detail is part of the values´ system taught in taekwondo.
I have another chance to grade for my black belt in December, which coincidentally is when my next milestone update is…so fingers crossed I have great news to announce.
Now to the most important part: how my AAAF sponsorship has helped me on my journey with alopecia.
It took the financial pressure off my Mum, enough that she was able to set aside money for my new foot and shin guards, which were long overdue and driving my instructors crazy that I was still wearing my junior set from when I first joined at 8 years old (you can imagine how much my feet have grown since then, being 16 now!)
As you have to pay for classes regardless of whether you can attend or not, it was also less stressful knowing my martial arts were paid for, even on days I was sick and couldn’t go. I continue to benefit from doing my martial arts, from both a physical and mental standpoint; they allow me to condition my body in preparation for when I join the army once I graduate in year 12, 2 years from now. They have allowed me to focus on my body as a strong,powerful and resilient vehicle in which to live and take the focus off my scalp in an otherwise superficial society.
My AAAF sponsorship and my martial arts training go hand in hand, delivering healthy viability to stay positive and active while being social at the same time (and that is the most important thing for anyone with alopecia…To not hide away from the world.)
Outside of ATI, Student Services at my school (Belridge Secondary College) put some AAAF brochures and posters up in the Student Services building; this is where kids go for support from their year coordinator and school psychologist and hopefully, it will bring awareness to kids who have never heard of alopecia before as well, as serve as reassurance that there is a support network should any future students develop alopecia, as I’m sure I’m not the first at my school and won’t be the last. It feels good to know that I am the one to bring awareness about alopecia and the AAAF to my school. I have also managed to accomplish the same at my weekly army cadets unit (507 Joondalup) as nobody there had ever heard of alopecia either, including our Padre (cadet title for psychologist/support staff) so they willingly put some brochures in their office and headquarters too.
I’m still yet to begin my journey on immuno-suppressant therapy as the public health system has a tediously, long waiting list between appointments at the Perth Children’s Hospital. Still, I’ve had my MVR/Rubella and Hep B booster jabs in the lead-up to starting the Methotrexate tablets. In August, I participated in a Pfizer study on people of all ages and genders with different types of alopecia. It took a week and was very detailed, answering lots of questions about diagnosis, medications, symptoms, health professionals, psychological and physical effects, support available and social impacts. I was asked to send videos and photos of myself talking about my alopecia and also any medical costs or additional factors, that prevented me from getting any help for my condition. The pharmaceutical company claims they need all these case studies to put forth their intended medication for FDA approval. Whether it works or not, it’s good to know I’ve been instrumental in the development of a future, potential cure or aid for alopecia.
And yes, of course, I made them aware of the AAAF and all the great work they do to support our alopecia community.
It has been about two months since my last update. Here is how I am going with my Singing scholarship in 2022. I am very grateful to have received this as I have now moved on to learn more advanced and more difficult skills with my singing.
This semester, I have learnt more new vocal exercises, the ree reh raw rah roo one to help build my breath and the diaphragm for holding long notes. I really enjoy learning more difficult and higher-skilled exercises as it makes me feel really good when I do them well and get congratulated, as well as they can also prepare me for more difficult pieces and songs for exams. I am now doing a Grade 4 Singing Exam with the Australian Guild of Music Education. My songs are Valerie by Amy Winehouse, A Thousand Miles by Vanessa Carlton, Fearless by Taylor Swift and Colours of The Wind from Pocahontas.
I am also very thankful for the scholarship because I can now do so much more with my skills. And something even better is my singing teacher herself, Miss Elizabeth Panov (Miss Liz). She keeps on encouraging me and helping me so that I don’t feel down when I am working on hard pieces and exercises and cannot master them as quickly as I would like to. She is an amazing teacher and I would not have anyone else on the entire planet as my music teacher.
I actually need to share something exciting with you – In my last exam that I did in June, I was recommended for the award!!! It is given only to the top few students if they do achieve grades of a certain level and I am so excited that in this exam I got the highest grade so far!!!
Thanks to this scholarship not only that I can learn so much more in my music, but I can escape from life and what challenges it throws at me when I am singing. This helps me relax, focus and calm my inner body with the things that I actually like and enjoy. I really wish for everyone to find something that helps them the way singing helps me.
Once again, thank you AAAF for the Scholarship/Sponsorship and I hope that other kids will get to enjoy my little update.
I am nine years old and was diagnosed with Alopecia Areata in kindergarten at the age of five.
From the age of five to seven, I had small patches of hair that would fall out and regrow with the compound treatment of DCP.
At the age of eight and during the lockdown of Covid-19 slowly all my hair fell out.
With my family’s support and the treatment of Tofacitinib Tablets from my dermatologist, my hair is slowly growing (with minor patches still falling out).
Even though my body attacks my hair, I don’t feel it changes who I am and I still have the confidence to continue my days at school, playing with friends and participating in activities such as cheerleading, swimming and horse riding.
Some days I wear a colourful headpiece, other days I choose one of my many colourful hats. I do have a wig to wear “just in case”. However, most days, especially around my family and friends, I choose not to cover up my alopecia and embrace who I am.
I recently joined the Alopecia support group and have been to a couple of the catch-ups close to home. I have met a lot of people like me, this has helped me feel more comfortable with having alopecia and has also helped my family with support by joining the alopecia community.
I have been given the extraordinary opportunity to have private horse riding lessons thanks to the sponsorship of the Australia Alopecia Areata Foundation. This has helped me work on technique and has also helped with my confidence and keeps my mind healthy. When I am older I hope to help and show other kids with alopecia that they can still be themselves and follow their dreams.
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.
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!
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!
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.
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!
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!
Love, Alopecia 