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.
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.
I am currently working hard in preparation for competition season and I have lost my hair, again!!! Would you believe it all fell out again in just 1 week! After a couple of days, I asked my mum to shave my head. This was a hard time for me again as I started at a new school this year and had to again explain what was happening to me to my new classmates and teachers but having gymnastics to go to where everyone there knows about my alopecia and it doesn’t matter. Hair or no hair it is my ability to do the skills at gymnastics that makes me happy. Gymnastics is my happy place where I feel happy and comfortable and like I fit in no matter what my hair is doing.
Having AAAF sponsor me and help me spread awareness at my gymnastics means that my sister and I as well as any other child that looks different feel more accepted and comfortable. Gym NSW recently published an article about my sister and me which made me proud to know that I am trying to make a difference for others. My gym is going to write a story about my sister and my alopecia to send to their members as well which again makes me proud to be representing AAAF and helping other kids out there with Alopecia to see that they shouldn’t let it stop them.
I can’t wait to compete at the Men’s Artistic Gymnastics Grand Prix in July and hope to make it to State. Knowing that AAAF helped me get there makes me so happy.
My favourite apparatuses are Pommel and Parallel Bars, I think maybe being more aerodynamic actually helps me move faster… well, that’s what I tell myself anyways.
At the age of 29 (almost 25 years ago), my hairdresser told me that I had a few bald spots on the back of my head, roughly the size of 20/50 cent pieces. The spots were under my long, thick dark hair so I never saw them myself. Each time my hairdresser would check for me and let me know that the spots appeared and disappeared randomly. It never bothered me as they always grew back and I could never see the impact.
One summer, when I tied my hair up, my husband told me that there was no hair in a strip at the back of my hair, ear to ear. It still didn’t bother me as I couldn’t see it and I presumed that it would grow back, which it did. I just wore my hair down that summer.
Towards the end of 2020, now 50 years old, I noticed that my eyebrows were disappearing. This was the first time the loss of hair had impacted the way I looked and I started getting anxious. I saw a dermatologist and, after discussing my history of spots, he confirmed that I had alopecia areata and suggested that it was likely the eyebrows would grow back in the same way that my spots always did. He also gave me a topical steroid to try. In the months that followed, my eyebrows completely disappeared. I became more and more sensitive to the loss and when looking in the mirror, I didn’t feel like myself at all. Without my eyebrows, I felt my face had no definition and as a consequence when I looked in the mirror, I didn’t recognise the person I saw. I became very self-conscious and felt like everyone was looking at me. Little did I know, there was more to come!
One Monday morning, mid-April 2021, I noticed a lot of hair on my brush. That evening, even more came out. This continued for a few days and it became clear that if the loss continued at that rate, I would very quickly have nothing left. I quickly booked an appointment with my GP who didn’t really offer much comfort or suggestions. Within 2 weeks, there was so little left that I decided to cut it all off, leaving me with a bald head. I was surprised how much it helped me mentally to cut it all off however it was also devastating as I hadn’t realised how much of my identity had been tied into my long, thick hair.
Adjusting to living with alopecia was very challenging. Despite having a loving, supportive family, it can be very difficult to look in the mirror each day and feel good about myself. I started off always covering my head with caps and scarves. Unfortunately, hitting menopause at the same time as losing my hair meant that I was also being hit with hot flushes which meant having my head covered with caps/scarves (let alone wigs!) was quite uncomfortable.
I’ve always loved singing and in early 2020 I joined a local women’s community choir. A couple of months before I lost my hair, one of my friends at choir was going through chemotherapy (for the second time) and had lost her hair. She would come to the choir with her head covered but often during rehearsal, she would take off her scarf, showing her bald hair. I knew that a number of the women had been through cancer battles and I could see how supportive and encouraging they were regarding such health challenges. The accepting atmosphere gave me the confidence to remove my cap for the first time in public (during a rehearsal) since losing my hair and even to go without covering my head at our mid-year concert in July 2021. For me, I’ve found that singing is a lot like practising mindfulness- there is no room for thinking about myself as I’m so busy focusing on the words and music.
I’ve thought about applying for an AAAF sponsorship for a while now but wasn’t sure I was ready to share my story more broadly. Lately, I’ve remembered how helpful it was for me to read the stories of others when I was first diagnosed with Alopecia Universalis and decided to apply. Aside from letting people know about the great support the AAAF provides, I’m hoping to encourage others who might be struggling to come to terms with the challenges of alopecia to think about participating in a social activity such as joining a community choir. It has made such a difference in my life and I’ll forever be grateful to the wonderful women at the Community Choir and Strike a Chord who continue to make me feel like I can take on the world.
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.
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.)
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.
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.
I am pleased to say that I have been continuing to work hard towards my goals in Crossfit since I received my sponsorship. The event I was sponsored for was back in August, and I’ve been training hard since then to continue in the community competitions. I did, however, hit a bit of a hurdle and about a month after the competition, I tore the ligaments in my ankle. This derailed my competition plans for the end of 2022 but it hasn’t stopped me fromtraining and I think I’m coming out the other side better and stronger.
The event I was sponsored for initially was the 2022 Masters HQ CrossFit championships – so it was really awesome that the first competition I returned to was the qualifying stage of the 2023 competition series in January. The workouts were really challenging but it was a great experience and it was awesome to put to work many of the skills I have been able to work on through the sponsorship. While I’ve made it through to the next round, I, unfortunately, won’t be able to get to the next event – but I’m looking out for other competitions during the year!
The CrossFit community is amazing and we also held a beach volleyball day, which our gym Crossfit South Wharf dedicated to being a fundraiser for AAAF. I was proud to speak at the start of the event about the foundation and the incredible work it does, especially with the kids adventure camps. So many members got behind the event and made donations through the website, and I’m really proud to have been a part of it and to be able to share awareness about alopecia and the great work of AAAF.
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.