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.

My alopecia story – Sonja

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.

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.

Katie’s Update.

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 from training 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.

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.

Michelle’s Final Update.

Taking part in an AAAF sponsorship has been an amazing experience that I’m so happy I decided to apply for! Learning how to ride a horse has always been something on my bucket list. I wanted to experience the feelings of liberation and self-assurance that come from horse riding, but prior to the sponsorship, I didn’t have the financial means or confidence to do so.

Having a sponsorship was helpful on an emotional level on those days when I felt like shying away from the world. I’m a naturally introverted person, which alopecia tends to amplify, so the responsibility of having sponsorship and regular lessons pushed me to step beyond my comfort zone and remind myself that life is about living and refocusing on what makes me feel empowered and healthy.

Being at the equestrian centre for my lessons was also beautiful. Getting to horse ride right beside the ocean and with sweeping views of the hills was picturesque, and provided opportunities for reflection, away from the hustle and bustle of everyday life. Some of those reflections included reminding myself that people are far more focused on themselves than someone with alopecia. Especially when you’re doing a sport, when everyone is mostly focused on developing their skills or, in this case, not falling off their horses!

I’m so grateful to AAAF for providing opportunities like these sponsorships for our community. The benefits for me have been long-term, as I now feel emboldened to engage in new and different physical activities that I hadn’t felt brave enough to try before. (Some of the sports I’d like to try next include karate and archery, to name a few.) I’m also excited to continue working on horse riding in my own time to take advantage of those longer-term effects of fitness and self-reflection. Thanks, AAAF!

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