Lani – My Alopecia Story

I don’t remember when I started to lose my hair. My mum says I was about 2 years old. It started with a tiny patch on the crown of my head, but that grew back a few months later. About 6 months after that the patch came back again but this time instead of growing back, it got bigger and bigger. It happened really quickly and within 6 months all my hair had come out. My eyebrows and eyelashes quickly followed.

I have had no hair for all my time at school so most kids are used to it. When I started at school it was fine because I was in kindy, but when I got into years 1 and 2 some of the older kids didn’t understand and would say things that weren’t so nice and that was really hard sometimes.

My friends and teachers are great though, they really support me. I wear headscarves most days. I don’t think any of them even think about the fact I have no hair anymore.

A lot of people don’t know what alopecia is and assume that I am ill, they like to come and chat with my mum about it and she has to tell them about alopecia and how it affects me. Sometimes I don’t like it when people stare, and little kids sometimes point and whisper but other times I feel confident and don’t care about other people.

I’ve always wanted to do gymnastics, I love practising at home but I’ve never had lessons, but thanks to the AAAF sponsorship programme I am about to start at my local academy. Some of my friends already go to the academy that I am joining and I can’t wait to see them there, there are lots of skills I will learn and it’s going to be great fun.

Phoebe’s Alopecia Story

Hi, my name is Phoebe and I am 31 years young living with alopecia!

My story starts back when I was in Grade 3. I was brushing my hair when I noticed large amounts of hair falling out. When taking a shower, clumps of hair would gather in between my fingers and fill the bottom of the shower. I told Mum and we went to see the family doctor. By this stage, I had started developing 2 large bald spots at the front of my head. The doctor was unsure what was causing my hair to fall out so he referred me to a specialist who diagnosed it as alopecia. It wasn’t long after that I made the decision to cut off my ponytail and shave my head as I knew losing all my hair was bound to happen sooner rather than later. 

We visited the Melbourne Children’s Hospital and tried a few different treatments but nothing seemed to work. 22 years later here I am still bald as a badger but that doesn’t stop me! My hair comes and goes.  Sometimes I get a few patches on my head or my eyebrows or eyelashes grow but that can all change in a blink of an eye and it all falls out again.

One of the most challenging parts of having alopecia and being an active kid when I was growing up was the sweat running into my eyes – gee it stung!! Did you know that one of the reasons for having eyebrows is to absorb sweat so that it doesn’t run into your eyes?  Makes sense hey! I have never let my alopecia get in my way and I am always up for a new challenge or adventure.

One of my latest interests has been playing the guitar, an instrument that I have always wanted to learn.  Who doesn’t want to play and sing along to their favourite tune? I have been lucky enough to receive sponsorship through the Australian Alopecia Areata Foundation providing financial support to cover my guitar lessons.

A MASSIVE THANK YOU to the AAAF for giving me this opportunity to explore a new hobby and giving me a platform to share my story with others. 

Stay tuned for updates on my journey.

Isabella’s Sponsorship Update

I am so excited for competitions to begin. We have started working on our routine preparation for our first competition in May. Our upcoming competitions are at different locations to my home gym and I am looking forward to spreading awareness of Alopecia at all the gyms we go to for our competitions.

I was so proud when Gym NSW recently published an article about my brother and me having Alopecia and being sponsored by AAAF. I was even prouder when the amazing Breanna Scott, commonwealth Women’s Gymnast came to see me at my gym after reading the article where I mentioned I aspired to be just like her. If it wasn’t for the AAAF sponsorship this would not have happened and I am so honoured to be sponsored.

I have so many competitions to look forward to this year and then can’t wait for State Trials. To make it through to state would mean the world to me and knowing I have AAAF helping me get there is amazing. My hair is growing again at the moment which is amazing but my brother has fallen out again and being there to support him is important to me. We are lucky to have one another to support us through the Alopecia roller coaster.

The AAAF camp is coming up, I went last year and made some of the best friends, knowing the AAAF gives us these opportunities is amazing, having their support really helps me feel not so alone.

I can’t wait to share with you my achievements even though just going out there on the floor and competing to the best of my ability whilst having Alopecia is a huge achievement on its own.

Treatment Algorithm for Alopecia Areata

All information has been taken from the ABC Interview located in this link.

Statement from Professor Rodney Sinclair a Professor of Dermatology at the University of Melbourne and director of Epworth Dermatology.

We went pretty much 40 years without a single new treatment, and then in the past two or three years, we’ve probably got about 40 new emerging treatments. And this often happens in medicine, that once people make the fundamental breakthrough in science, molecular biology, then targeted treatments develop. And then once someone proves a targeted treatment works, then all the other pharmaceutical companies try and copy it, and develop modifications to it. And so the field moves very, very quickly.

We saw this at the turn of the century with psoriasis. We got the very first biologic treatments for psoriasis, and within a few years, we had about 20 new treatments. And as a consequence of that, all the psoriasis wards in the hospitals had to close because the patients were now being managed as outpatients with injectable treatments. I suspect we have seen similar changes in other diseases, with rheumatoid arthritis and perhaps even inflammatory bowel disease. I think we’re on the cusp of seeing the emergence of a new paradigm shift in the treatment of alopecia on our doorstep.

How effective are the treatments?

The historical treatment for alopecia was prednisone. Prednisolone worked in about 80% of patients, but many people had to continue taking it and then they started to accumulate all the side effects associated with prolonged prednisone use. It’s a steroid and so that steroid treatment gave the treatment a bad name because many people were either intolerant of the side effects or made a decision that the side effects were worse than the disease itself. That’s now changed with these new treatments. They belong to a family of medications called Janus Kinase Inhibitors (JAK).
JAKs were actually invented at the Walter and Eliza Hall here in Melbourne. A fellow called Andrew Wilks who basically set the whole ball in motion, spoke at one of the conferences we ran in Melbourne, he was saying that globally there are over $20 billion in annual sales of these Janus kinase inhibitors for the treatment of a whole range of diseases, of which alopecia areata is probably the newest one added to the list.
And what we’ve just seen in the last few months is the first of these medications has now got FDA approval in the United States, and so that’s now being widely prescribed throughout America. It’s got approval in Europe through what’s called the EMA, which is their equivalent, the equivalent in Japan. And it’s now under consideration by the TGA. And so, when you think about all these regulatory bodies around the world, the FDA is probably the highest bar that you’ve got to get over, and this medication is now an FDA-approved treatment for alopecia.

Does the hair stop growing when people stop taking JAKs

We’ve been fortunate enough to have patients enrolled in clinical trials using these medications for the past six years now at our centre and had a number of patients who have been able to stop the treatments, and they’ve managed to continue to keep their hair. But there are also patients who when you stop the treatment, it relapses. And a little bit of that depends on how long they’ve had the disease before they have the treatment. Patients who might have had the disease for 10 or 15 years, they’re more likely to require ongoing treatment. However, patients who are newly diagnosed tend to have a better prognosis, and many of them can stop the treatments without a problem. But ongoing treatment is not necessarily a problem because in diseases like rheumatoid arthritis, for which some of these drugs were originally designed, it was always the intention that people would take it lifelong, and so the safety profile for these medications, when they were being developed, was designed for people to take it lifelong. In alopecia areata, I think we’re going to be fortunate that many patients will be able to stop the treatment after a period of time.

If you’re having this treatment for life, are there side effects that accumulate?

There don’t appear to be side effects that accumulate. It tends to be very well tolerated. With the one medication that’s been approved by the FDA in the United States, that’s one called Baricitinib, the main side effect that we tend to see is a little bit of mild acne that we can manage with some topical antibiotic ointment. We sometimes see a mild elevation in their cholesterol but it’s not enough to require treatment and, on the whole, it’s a really well-tolerated treatment.

Jesse’s Milestone Update.

Hey everyone, just checking in for one of my last milestones to let you all know how life has been for me on my journey with Alopecia Universalis. Since the last time I checked in, I have started on immuno-suppressant therapy but I was already on a non-stimulant ADHD medication that has low blood pressure as a side effect. I had to play around with the dosage with the dermatologist at Perth Children’s Hospital. We eventually decided to try a half dose as a full dose was making me feel very weak & dizzy. Mum was having to take my blood pressure multiple times a day to make sure I was within a safe range. The only downside to halving the dose was that the dermatologist thought it might slow down the progress of any hair growth and they seem to be right as I’ve had no visible hair regrowth other than a 1mm fuzz you can see under a microscope, though a few blonde eyelashes grew on one of my eyelids…shame it wasn’t both. Still have no eyebrows or body hair but am going to try upping the dose to a full tablet over the April school holidays when Mum can monitor me more as it is a bit hard when I’m at school.

On a very exciting and positive note, after many painstaking years where I wanted to give up repeatedly, I finally attained my last 2 tags necessary in order to grade for my black belt at TaeKwonDo and that is happening at the end of this month so I will be sharing pics and video of that once it happens. I really want to thank AAAF for the support and sponsorship that has made my journey to black belt a reality and honestly, I couldn’t wish for a better ending to my sponsorship period as I approach the last quarter.

My journey with alopecia has been a lot like my journey with martial arts, finally getting to try a medication that has given many people hope and success is in essence a parallel with achieving every stage leading up to my black belt…the finish line is so close, I can hardly believe I’m actually at this point. It has taught me a lot about life in general and perseverance. I’ve watched my younger brother go through the fashion trend of getting a mullet to fit in at school and I still shake my head and wonder how these kids can take their hair for granted so much that they deliberately go out and pay for one of the least appealing hairstyles known in history, second only to a skullet or Edgar…look them up if you’re unsure, ha, ha. I actually love my brother deep down, way deep down.

I have come out of my shell so to speak in that I also started an outdoor phys ed class at school and every Monday before school our class goes to the beach and snorkels or goes bodyboarding…something I had never done before nor wanted to expose myself to as it meant the likelihood of someone seeing me without my hat, but I have actually loved every minute of it and ask Mum to take me to the beach on weekends, something I never thought my alopecia would “let” me do. Each week, I’m mindful of the person I’m developing into and the headway I’ve made (if you’ll pardon the pun.)

Lilly’s Update.

My last six months have seen a lot of changes. Firstly, my parents made the decision to move interstate. While I was finishing year 8 at boarding school, Mum and Dad made the big move from Nhulunbuy, NT (our home for nearly 11 years) to our new place. At first, I was surprised and a bit devastated about the move, I feared having to start at a new school (being a new student again), and I was nervous about starting at a new swimming club and not being able to say goodbye to all my friends.

After arriving, I joined the local swimming club and instantly fitted in. I made great new friends and worked hard at training over the January holidays. I have been training six times a week as well as one land session. I love my new club, my Coach Theo and my teammates. It is because of the hard training that I was able to accomplish some great new personal best times at the recent 2023 Swimming Championships. For the 14-year-old girls, I came 2nd in the 200m Freestyle and took -4.58 off my PB, I came 4th in the 200m Backstroke and took -5.34 off my time. I also got 5th in the 100m Backstroke and 6th in the 100m Freestyle. I have also competed in my first Aquathon which is an ocean swim followed by a run component. I really enjoyed the challenge of swimming in the ocean and look forward to doing it again at the end of April in Bundaberg. I would definitely say that one of my highlights for 2022 was the AAAF Camp. This was an amazing experience and one that I will never forget. I met some great friends that I am still in contact with and cannot wait to see them again soon.

It has been a whirlwind this past year but it has made me understand myself better, more resilient and brave to have a go at everything. I will continue to swim and compete, I will continue to try new things and I will continue to be proud that I have Alopecia. It has been amazing to have this opportunity and would like to say a HUGE thank you to AAAF for your support.

Michael – My Alopecia Story

It all started in May 2015 and I was 4 years old – that was when I had my last haircut. No, I don’t have super long hair that I can sit on, I have alopecia which means I have no hair, no eyebrows and no eyelashes.

Mum and Dad tell me that just before my 1st birthday all my honey-blond hair fell out in less than 2 weeks. It grew back, sort of, and I had patchy brown hair for a few years and my first haircut when I was 2 and a half which was kind of a big deal. Then when I was 4 my head was shaved, and my hair never grew back.

There are a few things that you can’t do with alopecia. Firstly you can’t get knots in your hair, you can’t get head lice (and those egg things) and you won’t get shampoo in your eyes.

Alopecia doesn’t stop me from doing anything that my mates do. I enjoy school, reading, swimming, guitar and of course tennis. My team won the premiership last season, so now we’re in a higher division playing more skilled kids. The rest of the team wears a hat depending on the weather – I wear a hat most weeks, and in summer I change my hat halfway because I get sweaty.

Did I mention that I have a collection of hats and beanies – one for every occasion.

I want other kids to know that alopecia doesn’t stop you from doing anything.

Please don’t take my hat – hiding hats from someone with alopecia isn’t a game. And if you see me taking my hat off at tennis, don’t worry you can’t catch alopecia but it won’t stop me from giving my all on the tennis court.

Bianca’s Update.

I am loving my reformer Pilates classes I have through my sponsorship. I go to 3 classes per week. Strength, Athletic and Cardio.  I usually go in the morning so to set the intention for the day so I feel good. I have never felt so fit, strong and healthy in my life. I have never been so interested in exercise before I found reformer Pilates and so glad I did. I also participated in a hot mat Pilates class, it was a lot more challenging than the reformer, I think I will take some more of those classes but maybe only once per week.

I love how in the 45 mins of the class I am focusing on my health and nothing else. With the steroids treatment my hair is growing back which I am really pleased about. I am starting to come off the medication and looks like I might be coming into remission. I do have a small few patches left but we are going to inject them with the steroids too. I think seeing a naturopath has helped me immensely while being on the steroids for so long.

Abbie – AAAF Sponsorship

Hi, my name is Abbie, I am 10 years old and love to dance. I have been dancing since I was 4. Miss Caroline was my first dance teacher and she inspired me to keep dancing during the time of my alopecia journey. When I was 6 years old, I got Alopecia Universalis. I was in year one at school when I lost all my hair. Miss Bower was a schoolteacher who was supportive, she introduced crazy hat day on Friday and my friends could wear hats with me.

Now I dance three types of dance, Jazz, Hip Hop and Tap. I couldn’t pick a favourite; I enjoy all of them so much. My new dance studio has given me many great opportunities to dance at different events such as Telethon. I performed in both a telethon commercial in 2021 and live at a telethon in 2022. It was such a great experience for me because I loved watching the telethon each year and it is such a great cause for the sick kids in WA.

My studio has a high standard of dance and has encouraged me to continue to do my best. This year I hope to be able to compete in some competitions for tap and jazz. The AAAF sponsorship will make it possible for me to compete. I look forward to reporting back on the results of the competitions that I enter. We also every year do Crazy Hair Day at school where I love designing the theme that gets painted on my head. I love seeing all my friends support me for this day with the crazy hairstyles they come up with.

Claudia – Milestone 

Since our last Milestone Claudia has really come a long way in her self-esteem and how she is managing her Alopecia. She has received her new Freedom Wig which has been such a blessing. The wig enables her to participate in Cheerleading with the confidence that she can do all the required movements without the worry that it might come off at training or even during competitions. This used to be a real concern for Claudia. Due to the support of amazing charities like Australia Alopecia Areata Foundation and Variety Children’s Charity Claudia has been able to participate in her much-loved cheerleading with the utmost confidence. The support they have provided during a very challenging period in her life has been immeasurable! 

This year Claudia will be competing in several Cheerleading competitions, one mid-year and two at the end of the year. They will be very big competitions held at Sydney Olympic Park with many participants and clubs from all over Sydney & Australia. Claudia’s position is called the “Flyer” which means exactly that, she is the team member at the top that gets lifted, tossed about and supported by an amazing group of team members. In Claudia’s words “It makes me feel on top of the world and I have the best view”. 

Claudia will also try and take her Cheerleading to the next level in 2024. She will be participating in trials to gain entrance to a selective sports high school for Cheerleading. The school is an Olympic pathway school and who knows, you may even see her at the 2032 Olympics in Brisbane which is the first year Cheerleading will be an event! 

The sponsorship program from the AAAF has allowed Claudia to pursue her passion for Cheerleading and follow her dreams without being held back by her Alopecia.

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