Just thought I would leave my profile/life story (this is my write up for my foundation)

Note: this is the story on the website for the princess sharlotte alopecia foundation in NZ and Australia.

I’m Anna and have had Alopecia Universalis since I was 7, and I am now 21.

When I first started losing my hair my mum and dad thought I was cutting my hair like I did with my Barbie dolls. Then one eyebrow fell out and it became obvious that there was something wrong.

As I remember it took a few visits to the doctors to figure out exactly what was going on. When I was diagnosed I was of course quite mortified that I would lose all of my curly hair and that it may never grow back. But I think now that losing it at a younger age was much easier than if it had happened in my teenage years. I had a longer time to learn to accept my self and my lack of hair before I started worrying about what I looked like for the opposite sex.

My hair fell out when I was at primary school and my young friends were very accepting, the only comment I remember that upset me at the time was that I looked like someone's bald grandad. All the other hurtful comments from that stage were from strangers in the public, like in the swimming pool even going to the supermarket. Other than that it was a good time, I had adopted hundreds of hats and they were my new "hair".

The year after my hair fell out we moved houses and with that I moved schools. I was very scared of telling all these new people about my condition especially after all the bad experiences with strangers who knew nothing about me.

I decided that I would wear a wig and forbid my parents to not tell anyone other than the teachers. I had this terrible 'poufy' wig and it wasn't like the amazing ones we get from freedom today, it couldn't swim, swing on the monkey bars or cartwheel like every other 8 year old girl. I think my peers had started to guess something was wrong and there were a lot of snarky comments.

I had a group of a few close friends that I am still friends with today, but other than that I was teased a lot, I guess it was because they were all suspicious and wanted me to crack and tell them all. A secret is much more of a big deal than it being out in the open. I wish I had told everyone from the start now.

The boys were the worst and my self-confidence suffered because of it. I was very shy and timid.

My dad being a pilot I was flown around the world and tried most available treatments or "cures" at the time. But after years of this I was bored of it and told my parents that if my hair was to grow back it would be on it's own terms, nothing was working or if I did get a little bit of fluffy hair back it was blonde, thin and always fell out again. Not that it was even long or thick enough to warrant me thinking it was coming back.

At my year 6 camp I was having a great time. I had had my new wig from freedom hair for about a year and I could finally join in with the other kids swinging upside down and going on the mud/water slide.

The first time I went down the slide it was great, so I ran to the top for another turn....

On this last slide my wig flew off at the bottom as it was slightly to small for me and the back was sitting quite high at the back of my head. The water pressure got under it and it went flying. I knew it had come off, as I was underwater at the end of the slide. I held my breath for as long as I could so I wouldn't have to come up and face the hundreds of kids around the slide. It was one of the worst days of my life. My secret was out and I surfaced to a mixture of shocked/horrified faces and laughs from the boys who regularly teased me.

I think everyone knew I wore a wig at this stage but it was a shock for them to have there suspicions confirmed and to see me bare. I cried in my room for hours and my mum drove up to the camp to see me. I wanted to go home but mum said I should stay, this is not what I wanted to hear then but it was one of the best things she did for me. It made me face all my peers and explain my alopecia to them. They were so much better with me after this as I wasn't treating this moment as a big deal and I wasn't running away home from it all.

I learnt to not be shy about my condition at this stage and moved to my high school the following year. I told everyone about it but being at an all girls’ school I can say now that there was a lot of teasing and bullying.

Everyone accepted it after year 8 and I had a really amazing group of friends who supported me and never let one single person get away with being mean to me again. I have to say that one or two of these girls who are still my best friends were some of the girls who originally teased me, but they realised that it was terrible of them and realised it was there immaturity that lead them to it. They still feel remorseful about it but people make mistakes, they should be forgiven if they apologise.

When I was 14 I had a great group of girl and guy friends and we all hung out together every weekend at each other’s houses. But I still was really shy with strangers and about my hair. I still hadn't ever shown my friends what I looked like without my hair. I hid photos of me without my wig when I was younger.

As the wigs were better then than when I was younger I looked almost the same as everyone else, minus the eyebrows and lashes.

During the age of 13 and 14 I had been asked to join numerous modelling agencies but I never took it seriously un till I was out for dinner for a friends birthday and a woman named Tess from 62 models and talent sat down next to me and started talking to me about it. I agreed to go into the agency and have some pictures taken.

I met the owner Sara Tetro and she took me under her wing and put me on the books. They had not realised I had no hair they just thought I had an unusual edgy look with no eyebrows that would work really well in NZ. As soon as I told them I had alopecia they were very excited. They asked if I would model bald and I was hesitant at first and said it would depend on the circumstances. I didn't want to be on a billboard for hundreds to see or anything!

My first test was shoot was with Monty Adams a very well known photographer in NZ and Oz. The pictures were sent to pavement magazine, an iconic mag for discovering new modelling talent. They loved them and begged my agency to let them print them. Monty and Rachel (the stylist) had made me feel very comfortable with them and I took my wig off for them and did some shots bald. These are the ones Pavement wanted to use.

I was really scared what people were going to think, but the response was fantastic. Everyone I knew loved them and thought I was beautiful and looked stunning. All my friends loved them the most, this was the first time they had seen photos of me bald, all my male friends were very impressed as well and were very proud of me and to be my friend.

It's funny what the title model does for you; I went from Anna the "bald girl" to Anna "the model". I suddenly was a lot more popular.

Modelling boosted my self-confidence and helped me become the person I am today. I ended up on a billboard bald proving you don’t need hair and to be conventionally good looking to be beautiful. I was walking as many shows as allowed during fashion week. I had worked with the all-major designers in NZ, I did Ksubi’s show at Sydney fashion week and went to the UK and New York.

After having two articles written about me in Woman’s Weekly and Woman’s Day I had quite a few letters from young girls who had alopecia and how it made them feel better about themselves that there was someone else out there with it too, and that it wasn’t stopping them from there dreams. I had parents ask me to speak at the school that their child would soon be attending to help teach the pupils about alopecia and help them to accept the new student. I was 18 at this stage and the eldest students at the school would have been my age. I think it was easier to relate to someone my age and it was hitting closer to home than if a teacher got up and explained the situation to the school. I wish that I had had someone to teach my peers about Alopecia.

I realised that having modelling as a platform I could help others and inspire young girls and boys that anything was possible with alopecia. I know that sounds like a cliché that every one who faces adversity says, but alopecia gets pushed to the sidelines as what we have isn’t life threatening. Doctors understand our emotional pain but don’t see us as important as other patients or that finding a cure isn’t as important than finding other diseases cures.

Alopecia can be an emotionally crippling disease. I know this from first hand experience, as would all other suffers in the world. But we can grow and become beautiful, strong and confident men and women. The first step to this is to help grow awareness thought the communities of Alopecia. So that those comments of disgust I heard when I was a child can be eradicated.

This is why I am so glad that this amazing foundation has been set up by Matty. It is heart warming to see a father care so much about his daughter that he sets up a foundation to help bring awareness in New Zealand and Australia about Alopecia and to bring all people no matter what age together so a support system can be set up for us suffering with alopecia down here in the bottom half of the world. I am proud and delighted to be the spokesperson for the Princess Charlotte Alopecia Foundation and can’t wait to help anyone needing it in our two countries.