Victoria Gandera’s August AAAF Update.

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.

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

Victoria Gandera’s Story Update.

It has been three months since I received the scholarship so here is my update.

It has been a tough couple of months health-wise but hopefully, things will get better now.

This AAAF scholarship has helped me a lot in so many ways. 

To begin with, it helped with my music studies this year. I have learned many new singing techniques to help with my breathing and for holding notes longer. One of these techniques is called the iron gate. This is for when I am doing my counting vocal exercise. It helps save the air that you have in your diaphragm. When you are using the iron gate technique, you say a number, and then you lock all the air back up by closing your mouth.

The other way it helped me is that now I’m able to have more time in the studio with my teacher.

Thanks to that I am able to learn harder songs for my exams now. I have been learning some amazing songs by various artists and from various genres. Some of them are by ABBA, some from musicals, and I have also learned some rock songs by Avril Lavigne and classics by Olivia Newton-John. 

These songs are all part of my preparation for my grade 3 vocal exam, which will be coming soon. I will also be doing another grade at the end of the year which wouldn’t be possible if not for the scholarship – so thank you AAAF for allowing me to have that.

But the biggest benefit to all this is how much I have improved not only in singing but also in how much more focused I am. It is a lot of work to prepare for exams and I had to learn to manage my time better to fit it all in.

I am more focused, but also happier. Singing makes me happy and forget about the little troubles or snarky comments from kids at school about my hair. So I really hope I’ll be able to keep singing for more years to come.

Hopefully, on my next check-in, I can share the results from my vocal performance exam with you all!

Katie Hale Alopecia Story.

My name is Katie Hale and I have Alopecia Universalis. My hair loss came on rapidly at the age of 23 and it hasn’t ever come back.

Like most, I found a small circular patch of – well, nothing – on the back of my head on the right side. Having no idea what it was, I just assumed I had burnt my head at some point with my straightener and it fell out. My friend and I even had a good laugh about it and couldn’t stop touching it.

Fast forward a couple of months and I noticed it felt bigger. Then it just started to spread. Within about 2-3 weeks, I had the beginnings of five patches. Within the next seven days, I lost half the hair on my head which was incredibly stressful and traumatic.

I had no other point but to shave most of it off. I tried to salvage a longer patch on the top of my head but that lasted less than three days.

Over the next three months or so I lost the rest of the hair on my body. Fascinatingly, the hair on my right side always went first – my right eyebrow split in the middle, then my left, my right eyelashes fell out, then my left and most of my scalp patches were on the right.

I tried a number of treatments but they all just made me incredibly sick and never really succeeded in triggering hair growth. I couldn’t justify wreaking havoc on my physical health for the sake of some hair, so I made the (incredibly tough) decision to stop.

I was terrified of wigs so I have always rocked the bald look, which comes with its challenges. People often treat you differently and while that can be disheartening and upsetting, I feel like I have an opportunity to make life a bit better for others who look like me. If they stare at me because I’m the first bald girl they’ve seen, then maybe they won’t do it again to someone who isn’t as strong or who might be more self-conscious. Or if someone has hair loss, maybe seeing me go bald might just help give them that little boost of confidence to try it themselves if they want to.

I want people to feel confident to be themselves in and out of wigs so if my experience makes it that little bit better for someone else, then I’m happy and it’s worth it.

That is exactly why I’m so excited to raise awareness through this sponsorship – no one should ever feel like they are held back by their alopecia, but so many are. I want to show people that no matter how scary it is at the start, you can still achieve whatever you want to and do the things that make you happy.

Faye’s Alopecia Story.

Hi I’m Faye, I have had alopecia since I was five years old. This is the same age I started sailing.

During this time, I have experienced small amounts of regrowth but most of the time I haven’t had any hair. Some of the time I have not had eyebrows or eyelashes. It’s really frustrating having things change all the time.

I am now fifteen and the middle of three sisters. I am the only one in the family with alopecia. Most of the time I am OK with it but it is really hard sometimes wishing I had hair. When people first meet me I know that they are wondering why I don’t have hair.

I have sailed for 10 years and competed in four National Championships in the International Optimist and International Cadet classes. I also competed in the Tasmanian Schools Teams Racing competition and last year was invited to participate in the Australian Schools Teams Racing National Title. I have also competed in several SB20 national championship events.

Sailing is a sport in which females and males compete against each other. It requires a lot of preparation and interaction amongst all competitors. When I started competing at interstate regattas, where competitors, officials, and family members did not know about my alopecia it was initially quite difficult. I had to learn that my alopecia would make me feel worse if I missed out on things trying to hide it. My family and I find it a lot easier if we explain my alopecia so other people understand why I am like this, how it does not affect my ability to compete to a high standard, or my enjoyment and participation in activities. I feel like I have raised awareness of alopecia within this sport and will continue to do so. When people see I am comfortable I think it makes them comfortable.

I regularly volunteer with the Sailability program at a nearby yacht club to support disabled people with their weekly sailing. I am also a junior committee member at the Sandy Bay Sailing Club and have recently completed my assistant instructor qualification. I teach and support younger children in learning sailing. My alopecia is sometimes a point of curiosity to younger children. It is something I have to be brave about when they ask questions or notice that about me. Hopefully, when they meet other people with alopecia it will help them to accept them more easily.

I am thankful for the support of AAAF to assist with coaching costs from the Sponsorship. I am training to compete in some important regattas and the sponsorship is assisting me to access more training opportunities.

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

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.

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.

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