ALOPECIA AREATA WAS A BLOW AT FIRST, BUT ACTRESS GEORGIA VAN CUYLENBURG HAS BEEN STRENGTHENED BY IT.
Multitalented model, actress, comedian, writer and producer Georgia Van Cuylenburg’s new project, a documentary titled Baby Let Your Hair Hang Down, focuses on alopecia areata, which has affected Van Cuylenburg for several years. And the film all began with a cocktail napkin.
Van Cuylenburg, who has hosted such children’s TV series as My Magical World and That’s Funny and whose voiceover work includes Final Fantasy and Star Wars: The Old Republic, was waiting to perform a motivational comedy routine to a group of children when the title came to her. She quickly scribbled it down on a napkin, handed it to the cameraman seated next to her — who happened to be her boyfriend at the time — and asked him to help her shoot a documentary with this title.
They started filming the very next day.
“When I started the film, I just had the general feeling that I wanted to share a bit of what living with alopecia is like,” Van Cuylenburg says. “But as we shot more, it changed from being a film purely about alopecia to more of a film about being OK with who you are no matter what secret you are hiding. Then the even-bigger message for me became that things happen to us in life that we think are a tragedy but sometimes if you ask yourself, ‘What can I do with this tragedy?’ you might just find a way to change someone else’s world — as well as your own.”
Alopecia areata struck Van Cuylenburg as a teenager
Australian-born Van Cuylenburg began modeling as a teenager, with much of that work focused on her hair. When she was about 17, her hair began falling out in tiny spots. “I knew what alopecia was, but all the doctors told me it would just fall out in small spots and then it would grow back,” she says. “However, when I was 21, it started falling out rapidly. Basically, in two weeks I lost all of my hair but for a small tuft at the front.”
“I went into emotional protection mode. I couldn’t cry. I tried immediately to find the positive — why this was happening and why it could be a good thing. Of course, I was devastated, but I refused to let that really hit me. That being said, I was still scared. Every day I hoped that it would stop, but it just kept falling out until it was all gone.”
Van Cuylenburg was advised not to let people know about her hair loss, because it could have a negative effect on her career in Hollywood, but she was very open with those close to her, who provided a valuable support system. She also tried a variety of treatments, ranging from steroid shots to acupuncture to ultraviolet light, but nothing promoted permanent growth.
“I have worn many different wigs and hats over the last few years,” Van Cuylenburg says, “but I have realized the best solution is just to be OK with yourself no matter how much hair you have. I have done a lot of work coming to terms with myself as an alopecian. And a big part of that was meeting others with alopecia, especially kids, and seeing how well they ‘wore’ it.
“Making my film was a huge part of changing the way I dealt with my alopecia,” Van Cuylenburg continues. “I started it because I was sick of keeping a secret. As I went through the filmmaking process, I met so many wonderful alopecians that being open got easier and easier every day. When I learned what a positive effect my honesty could have on others, I realized I had no choice but to tell people about my alopecia. Bit by bit, I told more people, to the point where I can’t keep my mouth shut these days! I realized my life wasn’t about whether I had hair or not but about what telling the truth could do for me and for those around me. When I realized that, my alopecia became a gift and something I was proud of, not something I had to hide away.”
Alopecia provided a new connection between the comedian and children
Van Cuylenburg had already been doing motivational stand-up for children before her alopecia worsened. She subsequently found that talking about her alopecia strengthened the connection to children. “I could say to them, “See, I too know what it’s like to not feel like everyone else,” she explains. “My passion is children and their belief in themselves, so if my alopecia can help them see what is beautiful about themselves, then I will talk about it to kids every day of my life.”
To Van Cuylenburg, all of us have a little something that makes us feel different, whether it’s alopecia or something else. She encourages people with alopecia to realize they are not alone and that they have been gifted with the knowledge that their true selves are so much more than what is on the surface. And she hopes they can feel comfortable talking about their alopecia with others.
Baby Let Your Hair Hang Down was the subject of a segment on ABC’s 20/20 in 2011, and Van Cuylenburg hopes that it will be distributed on TV sometime in 2012. She believes its message is simple but important.
“I do want to encourage everyone to embrace the truth of who you are and to never, ever be afraid just to be yourself. I know it can be scary at first, but I hope that eventually you will see how much easier life is and how much more fun you can have when you are just being you.”