Oscar’s Alopecia Story

CA29AFEF-500E-42FE-83C8-F2A15A23A6C8Hi, my name is Oscar and I am 13 years old. I’m the eldest and I have a brother and sister. I have Alopecia Universalis. I developed this when I was nearly 8 years old. Before that I had thick, curly auburn hair. I had never lost any patches of hair before. I noticed a patch of skin on my scalp on the weekend and then it just all fell out! In one week I had no hair left on my head. I was in year 2 so I don’t remember a lot about it. I do remember that I was dancing in a concert, so we went to the hairdresser and got the patches that were left shaved into a Mohawk, which was cool and everyone at school loved it. But that fell out pretty quickly too. Then my eyebrows and eyelashes went too, after a few more weeks. It has not grown back, but occasionally it has tried to, sprouting some bits, sometimes I have eyelashes but mostly not.

I started drum lessons not long after the alopecia started. I was 8 years old and it was awesome fun. We got a drum kit at home too and I loved playing. Three years ago I started learning guitar and now I sing as well. I love listening to all kinds of music but mostly rock. My favourite bands would be Nirvana, Foo Fighters, Green Day, AC/DC, and Eminem. I think getting into music has helped me deal with my alopecia. When you are learning a song you have to really focus on that and not think of anything else, so it can be a good distraction. Apparently singing is one of the best things you can do to put yourself in a good mood, I definitely think that this is true! You can’t feel upset or angry, after belting out some cool tunes.

I love playing guitar and singing for people. I practice my music all the time and love learning new songs and improving. I have singing lessons and guitar lessons, I just want to learn more and get better. While I’ve been learning guitar for a few years, I’ve only just started singing lessons, so I am grateful to the AAAF for providing this sponsorship as it means I can continue these lessons for two more terms. I’ve learnt lots of techniques that help with my singing, such as breathing and voice projection.

I go busking which is heaps of fun. I’m saving up to by a loop, so I can add layers to my music and start making my own songs. I have a band I play with at school too, it’s fun to hang out with my mates and try and get songs going.

The AAAF have been an awesome support for me and my family, as we learned all about Alopecia. They gave us information and we have met and made great friends through meet ups with them. I’ve been on two camps with them, which are great because you get to meet other kids of all different ages who have alopecia too. It’s nice to not feel like the only one! I also like helping kids that might have only recently got alopecia, I tell them and show them it will be ok after a while of adjusting to it.

Oscar (5)I met a great mentor through AAAF, Carlo Napolitano who has the same alopecia as me and has had it his whole life. He was very reassuring especially as I moved from primary into high school. For a while I was worried about going to high school, I thought about getting a wig so I could blend in more.

But I realized I probably wouldn’t like wearing something on my head all the time and it would be something to have to bother with. I am used to people staring and asking questions when they first meet me, but once people know why I have no hair, it is not a big deal to anyone. I decided the best thing to do was what I always do. Just go to the new school answer any questions and let people get used to it.

I’m pretty fine about having it, I can’t really do anything about it anyway! If people ask I just tell them it’s alopecia, my immune system attacks my hair follicles and makes it fall out. The worse thing is that my fingernails peel off and I get really cold or overheat because hair helps your body regulate temperature.

The best thing about having alopecia is that sometimes it is good to stand out and have something different about yourself. I like that I am unique. Everyone is different anyway but there is not many kids going around with no hair.

I hope by doing this sponsorship I can help other people who might be worried about their alopecia, I want people to know it is ok to look different and be different. There are more important things to concentrate on than your appearance, such as being kind, being creative and rock and roll.

One thought on “Oscar’s Alopecia Story

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  1. Thank you for Sharing your story. I like hearing how this affects young people. My two year old grand daughter lost her hair and eyebrow s and was diagnosed at 15 months. I am hopeful she will be able to stay positive as she gets older and attend school with classmates who will have hair.

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