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Georgia Van Cuylenburg Headshot

How I Coped With Losing All Of My Hair -- At 21

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GEORGIA VAN CUYLENBURG
Georgia Van Cuylenburg

Most little girls have a very special connection to their hair. When I was growing up in Australia, I was always trying to make it the best hair it could be, and sometimes I got it a little wrong. The day before the first grade photo I decided I didn't want bangs, so I took the scissors to them. In fifth grade I shaved my eyebrows off and told my Mother they fell out. And in 6th grade I decided an under-cut was a good idea ... wrong!!

By the time I was 16, my hair was down to the small of my back, and my natural golden highlights were the envy of all the girls in my class. Body image issues plagued me in high school, but the one thing I loved about my appearance was my hair. When I was 18 I got asked to be a hair model by a famous hair salon, and my hair became even more the thing that I identified as ME. I was now officially "the girl with the great hair."

Three years later, my "great hair" and I were working in L.A. I told jokes, did TV and film, often on shows for children, helping them believe in their own 'magic.' I loved my new life.

Then one typical Wednesday, as I stood in the shower, I watched as hundreds of my 'great hairs' washed down my body. As I rubbed the shampoo through my hair, clumps fell out in my hands. I was too scared to get out of the shower because I didn't know what I would see in the mirror. When I finally did look at myself I could see spots of bare scalp peering through my hair. As I brushed and brushed I watched my clear white sink fill up with hair. I remember seeing myself in the mirror and holding back the tears. That day my life changed forever.

I told myself that there must be a reason why this was happening. I shouldn't waste my time feeling sorry for myself, I should just find out why. Over the next year I put myself through dose after dose of steroid and cortisone injections. I had the most horrific form of acupuncture imaginable. I ate every food, supplement and vitamin that you find when you Google 'hair loss.' But all the doctors I had visited were right: I had Alopecia Areata, an autoimmune disease where the body rejects its hair. There is no cure.

That first year I hid my Alopecia Areata. The few people who knew insisted that I should keep it a secret because no one would hire me. I wore a terrible wig that looked and felt like straw. It was so bad that I always wore a hat. (Believe me, a Californian summer spent in a wig and hat, on top of an ointment that creates constant 'sunburn' on your head, is a very painful and sweaty affair.) I couldn't work in front of the camera because I couldn't take my hat off. I wouldn't let men get too near because I couldn't work out how to explain why, no matter how many items of clothing came off, the hat had to stay on. That was probably the toughest year of my life.

I knew something had to change. I had lost so much of myself. I was no longer the girl with the great hair, and lying all the time was exhausting. I have never been one to avoid the truth. My work involved encouraging children to love themselves ... just as they were. Yet here I was hiding who I really was.

It was that realization that changed everything for me. I decided to stop seeing my Alopecia Areata as a burden, but rather as an amazing gift. I had always wanted children to feel that I really understood when they spoke about being different or alone. And now I had a big 'signpost' on my head that said "I GET IT!!!"

I started sharing my story with children, and I could feel an amazing change in the way they responded to me. When I started working on a documentary about the experience, kids and adults from all around the world emailed me and shared their stories. It wasn't just Alopecians; people with all sorts of 'secrets' started confiding in me. Almost everyone I met had a secret to share with me. Because I was standing before them saying, "this is me," they felt they could do the same. And very slowly, I learned to trust I was good enough as I was, that it was the essential me that people -responded to -- with or without hair.

Not every moment of honesty has been joyful. Dating in particular has been rough. I now tell every guy on the first date. I don't want to go a second date with someone who sees me only as 'the girl with no hair.' I'd rather wait for a man who can see the strong person I have become because I have no hair. Alopecia Areata has become my Man Meter.

Over the last three years my hair has come and gone. Sometimes I have it and sometimes I don't. I now have a cabinet full of wigs, but most days I prefer just to wear the hair I have. I am very excited about the progress being made towards a cure for Alopecia Areata, and I hope one day it is found. But I can't say that I wish I never had it because of what it has brought to my life. Without my Alopecia Areata, I never would have seen the difference that being honest about yourself can make in the lives of others. I never would have met so many truly beautiful people and through them learned that I am beautiful, too. I never would have really believed that something I thought was a tragedy could fill my life with purpose.

Today I have about three quarters of my hair. I don't have any bangs because half an inch is missing at the front. I also don't have any eyebrows. All the hair is missing at the back too, so I once again have a fierce 'under-cut' ... and this time I'm okay with it.

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