Tristan’s Story.

It was the end of February 2018 after what had been a brilliant summer, I slowly noticed two or three coined shaped patches of hair on the top of my head that weren’t growing more than half a millimeter in length on my already shaved head, a style I had kept since about 2014 for the look and easy low maintenance. At the time I didn’t think much of it as the patches still contained hair, I just wasn’t sure why they weren’t growing. 

I soon visited a dermatologist who instantly diagnosed me with Alopecia Areata. While I hid any emotion after being told the news, it was a big kick in the guts as I knew alopecia already ran in my family with my Mom and her sister (my aunty) having Alopecia Universalis and also knowing from a recent genetic test, that these autoimmune problems were caused by a gene mutation found throughout my Mom’s side. I tried to stay optimistic regardless, but not long after, a few more patches began to develop as well as them increasing in size and my overall health and immune system started to decline in what would lead to an extremely tough winter and spring, that also involved losing my sister to cancer. Throughout this time I would get monthly steroid injections into the affected areas and I gradually got back on top of my health with supplementation and exercise and by December I had achieved basically full hair regrowth. 

2019 soon came and with a head full of hair (although still shaved to a short length), I was back to the old me again, full of confidence, and shortly found myself back, dating and in a relationship. I soon forgot all about my alopecia from the previous year and life carried on as normal but as the latter half of the year arrived my relationship came to an end, so I soon went on a holiday for some time off to relax where I drank more than what was good for me. Halfway through the holiday I noticed a small bald patch the shape of a coin on my head and thought “here we go again”. I was confident it would be short-lived and that I would grow back straight away as I had already beaten alopecia before. Unfortunately, I guessed wrong and within a month I had lost about 70% of the hair on my head and elsewhere on my body and sadly knew it was time to go through the entire process again of trying to regrow it.

Throughout 2020 I would be back on monthly steroid injections to the scalp and would try multiple supplements, health products and try to look after my health as best as I could. As October of 2020 arrived, I had gotten back to about 85% regrowth and was confident that I would soon beat alopecia once again, but suddenly without any clue as to why my progress started to reverse. This brought me to the worst my alopecia had ever gotten, and in early 2021, My Alopecia had reached about 96% total hair loss all over my body. I was devastated and thought about just calling it quits and learning to live with the total hair loss. But being both stubborn and always optimistic I couldn’t just leave it at that, so I made the decision in April 2021 to roll the dice and start a new JAK inhibitor medication called Baricitinib to aid in the fight. I usually tried to stay away from immune-suppressing medications with steroid injections being about the only thing previously I was willing to take, but after a lot of consideration, I decided to go through with it alongside the aid of multiple holistic approaches. At the time of writing (September 2021) I am still on my journey of living with and trying to beat Alopecia. Win or lose, I will be glad knowing I had a crack and know I’ll learn to live and be happy no matter the outcome.

Sheridan’s Story

When I was young my hair was my pride and joy. I received so many compliments on it… I was known as the girl with the long plait.

Then one day, I felt the hairdressers cold fingers against my scalp. It felt barer and more exposed than normal. She quickly ran to my mum and I knew something was wrong. I had a bald patch about the size of a 50-cent piece. One patch at a time, the emotional roller coaster of treatments began and I grew up very quickly. I was confused, unsure, scared, I felt different and my lack of confidence penetrated many aspects of my life. I hid my hair loss with bandanas and wigs.

I began treatment, but it didn’t work.

I fell into depression, resistance and avoidance. I lost my identity, but I was unaware, insisting, everything was fine, when I knew deep down, it was not.

Overtime, my alopecia areata progressed to totalis, and most recently universalis. 

Shortly after the last hairs in my head fell out, I began to challenge myself by practising yoga. I would feel slightly nervous the entire practice until we got to the challenging pose, then I would breathe through it and feel AMAZING after. This inspired me to begin studying yoga therapy, mindset work, subconscious programming, embodiment, Jungian psychology and mindfulness techniques. 

It turns out, my self doubt and fears related to what I looked like, had little to do with the strands of hair that were (or were not) on my body, but much to do with the level of self trust and self acceptance I had inside. 

Once I could grieve the appearance I no longer had and develop self love, the confidence began to radiate through me, and I felt grounded in my feminine, powerful yet humble, ‘I-can-do-anything -and-so-can-you’ attitude. 

Now I’m so grateful to AAAF for supporting me in my meditation practice through this sponsorship. 

My Alopecia Journey – Kerri

Kerri was one of the recipients of the AAAF Sponsorship program which ran in 2019 and early 2020. She is a talented artist who put together a special exhibition about her journey with this condition titled Understanding Alopecia.

I went through a very stressful time 6 months before my hair started falling out, I never thought anything of it and kept on with life as you do. I did have a bit of hair loss, but I never really took much notice until I went to get my hair cut one day and the hair dresser told me she had found two round patches on the back of my head about the size of a twenty and ten cent piece. She suggested that I go to the doctor and said it could be alopecia, I had never heard of Alopecia before so this started a strong relationship with google researching Alopecia. This period of time was the worse as I didn’t really know what was wrong with me, the unknown and thinking it could be something worse was worrying.

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Alyssa’s Alopecia Story

Alyssa Gardner (3)Alyssa shared the first steps of her sponsorship journey with Love, Alopecia here

August 2019

The last 4 months of sponsorship through the AAAF for membership with Studio 360 Cycle, an indoor cycling studio in SA, have been incredible. Cycling at the studio has given me an opportunity to exercise and challenge myself physically without fear of accidentally misplacing my “hair”, which has been a big fear of mine since my alopecia developed. What’s fascinating, though, is that more engaged I’ve been with the sponsorship and the studio, the less my hair (or lack thereof) actually matters…

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My Alopecia Journey – Nellie

Alopecia is a deeply personal condition, something we must eventually come to terms with and, hopefully, accept within ourselves. Alopecia has been a part of my life since I was a teenager, and despite an internal hope that each episode will be the last, 20 years later, the condition looks like it’s here to stay. I’ve circled many times through having small patches of hair loss, undeniable baldness, complete regrowth and everything in between over the years. I’ve tried every treatment available but it’s now, ironically, with alopecia universalis that I’m finally able to find some peace with my condition.

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My Alopecia Journey – Alyssa

My alopecia story is a fairly short one. In November of 2017, my first patch of alopecia appeared. By March 2018, I was bald. By May, I had no eyebrows or lashes.

I always liked my hair well enough, but never thought of it as something that defined me. When I began to lose it, my biggest priority was maintaining an outward appearance of normality. I wasn’t unwell in any way and didn’t want anyone’s pity, so I was determined to hide my alopecia from the world. I’m lucky in that I wore a hat to work every day, so I could hide the coalescing bald patches with headbands and just put the hat on when I got to work. As things progressed though, the scraggly strands that remained became harder to hide and the person staring back at me in the mirror looked sickly.

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My Alopecia Story – Siarrah

Siarrah Kani (2)My name is Siarrah; I’m 13 years old, 14 next week. I am a proud recipient of the AAAF sponsorship program and I would like to share my Alopecia story.

My rollercoaster started when I was 2 years of age. Obviously, I was too young to understand the journey I was about to take but I was lucky to have a family who held my hand and travelled my journey with me.

I was living in Bargara Qld at the age of 2 all my hair disappeared. The next 12 months was a journey on its own trying to work out why my hair fell out. Once I was diagnosed with Alopecia the awareness and acceptance journey started. Mum contacted the local paper who published an article on “Alopecia Awareness” and this was the start of my acceptance towards my condition. My story was always about being Bald and Beautiful, I was well known not only for my hair loss but my beautiful smile. At the age of 6 we moved to Yeppoon, mum organised a Crazy Hat Day at my new school to create Alopecia awareness, this also helped being accepted in a new school.

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My Alopecia Story – Abby

Abby 2I was about 11 years old back in 2015 when my first bald spot appeared. Mum and dad didn’t think much of it and thought that maybe it was damaged and burnt off from a hair straightener. It grew back and then one spot turned to 2 and the 2 spots grew back. I had long thick hair and after my spots grew back I had it cut off short to accommodate the new hair that had grown back. Nothing happened for a while so we didn’t think any more of it and continued as if nothing had happened.

When I was in grade 6, spots turned to patches and patches then turned to the total loss of my hair in a matter of weeks.

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Creativity for healing from alopecia

52365703_2047032678726399_3051077769883549696_nBy Bianca

I’ve been dancing for pleasure for years and find it a vital form of movement for both my creativity and for health, wellness and happiness.  I’ve used other means of creativity in the past but just recently decided I also wanted to try painting. I got started because I find that it’s a form of downtime or relaxation and it’s both an emotional and physical therapy.

I love that I can express my emotions in colour and I’m always looking to expand the ways in which I create and connect to my emotions. I like that it is time out to be with my emotions and feelings when I paint.
Dance gives me a rewarding release in expressing myself in movement. We are so restricted and restrained around how we move through life and dance for me is a physical expression of emotion and helps me vent both frustration, anger, happiness when I dance.

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My Alopecia Story – Charlie

charlie-soccer-match-e1553213916982.jpgBy Charlie

I was diagnosed with alopecia in the winter of June 2016. It was funny because my parents didn’t realise anything was different about me and it was my friends at school that said ‘your eye brows are falling out’ and I went ‘what the’.  My mum then noticed that I had some patches and hair loss on my head.

It was a crazy time for a 10 year old boy not knowing what was going on and my mum was trying to work it all and we had many appointments and I mean many appointments.  My mum cried at the specialist’s appointment and I remember thinking, “alopecia sucks” but then I thought “I am going to own this alopecia”.

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