This is a story with lots and up and downs and bumps along the way. This is the story of me with Alopecia. This story all starts in Year 3.
Year 3 was a very up and down year for me. This is where my Alopecia story begins. In about the middle of the year, very close to my birthday, I remember this very specific time when my mum was doing my hair in the morning for school and she saw a little patch. She said to my dad what is this doing here or add least something like that. My parents decided to take me to the doctors. The doctor said don’t worry about it, but my hair kept falling out and it was hard not to worry about it! My parents decided to see a different doctor about it they recommended that I see a specialist about it.
A couple of weeks later I went to the specialist doctor and that’s when I got diagnosed with Alopecia Areata and got my first lot of medicine – it was so tiny about the size of a baby’s nail. At this time my parents knew nothing about Alopecia. I am surprised by how common it is and most people don’t know about it. I am pretty sure my mum googled it all night knowing the person she is! This all happened in one of my school holidays so when I got back to school we had circle time and I explained what I knew to the class and other people shared their personal things happening in there lives at that moment.
So that was mainly what happened in Grade 3 about Alopecia. Year 4 was a good year – my hair grew back and I had short, brown and very curly hair.
Year 5 was another up and down year. My hair fell out again at the beginning of he year, I got my first wig, introduced my school to crazy hat/hair day, lost all of my hair on my body and other stuff. The theme at my school that year was courage and I had to show some. In fact at the end of the year I won an award for the courage I showed!
At the start of the year I started losing my hair on my head and within 4 weeks I had lost my eyebrows, eyelashes and every other hair on my body. My mum took me to Professor Sinclair and that’s when I got diagnosed with Alopecia Universalis. He put me on a new medicine that tasted sooooooooooo bad.
At about term 2 I went to my teacher and told her about crazy hair day. She told me to speak to our deputy principal. He thought it was an awesome thing to do. So we organised it but we changed it to crazy hat day so it was more practical. Then the day arrived. It was awesome walking into school with a (homemade) hat and seeing everyone with theirs – even the teachers. This is when it started to get real. We had a special assembly and they showed the movie that Mum and I had made telling people about alopecia and what it was like to have it. It was on a Friday and the last day of term 3 I think. Everyone had to bring a gold coin or more. My friend Sophia brought in $50 and a boy called Ben in my class brought in $100, and we ended up raising about $1,100 dollars or around that amount which was donated to AAAF. BTW Sophia and I counted the money. So that was crazy hat day rapped into a small paragraph.
It’s wig time! After my hair fell out the second time in grade 5 I decided to get a wig. So the wig journey starts here. My mum and I went to the wig shop, but the wigs were really really really expensive. So we went to this other wig shop, which wasn’t as expensive. I’m not saying that it wasn’t expensive because I would be lying. I ended up getting this wig that was the same colour wig as my old hair. It was a difficult decision of whether to get a fringe or not. I ended up getting a fringe – sometimes I wish I didn’t! The funny story is that they say they have to measure and mould the wig, but when I tried it on it was the perfect size. So the next day I went to school wearing my brand new wig. When I walked into my classroom not many people realised that I was wearing it. My teacher told the class and so many people said
“Oh I didn’t realise”. I like it that most people don’t seem to notice anything unusual any more no matter what I am wearing.
I am now in Year 6 and still don’t have any hair – although we are still trying! I now chose each day what I feel like wearing. Some days it is a wig, some days a head scarf and very occasionally I go completely bald. I need to keep showing courage and am learning to embrace my Alopecia!