Month: March 2012

CAP Kid Spokesperson Georgia Van Cuylenburg on ABC’s 20/20

CAP Kid Spokesperson Georgia Van Cuylenburg on ABC’s 20/20

March 9, 2012
PHOTO: Georgia Van Cuylenburg was diagnosed with alopecia after her hair began falling out in clumps.

Courtesy Georgia Van Cuylenberg
Hair Model’s Worst Nightmare: Going Bald
By VICTORIA WHITNEY

Yesterday, 11:06 AM

Defining Her Beauty

Editor’s Note: A version of this story was originally published in 2011.
We are a culture obsessed with hair: From the big and small screens to the pages of fashion magazines, it seems no woman’s look is complete without a perfectly-coifed ‘do – and that poses a serious hurdle for aspiring actress Georgia Van Cuylenburg. Van Cuylenburg is bald.
Like 5 million others in the U.S., Van Cuylenburg suffers from alopecia areata. The disease results in sudden and often unpredictable hair loss on the scalp and often across the rest of the body. It is cyclical in nature and has no known cause or cure.
For the effervescent Van Cuylenburg, it is particularly ironic because she used to be hair model. She told ABC News’ Elizabeth Vargas, “My hair defined my beauty in that it was my calling card.”
Watch “My Extreme Affliction,” a “20/20” special series, Saturday at 9 p.m. ET.

A Devastating Setback

Van Cuylenburg grew up in Melbourne, Australia, where from a young age she was an overachiever who strove for nothing short of perfection.
“I was in choir, madrigals, school plays, the musicals, the debating team, the school band, the jazz band,” Van Cuylenburg said. “I played saxophone and gave oboe a go, (joined) the swim team.”
She was also known as the girl with the beautiful hair.
“I had this thick, amazing hair (with) natural blonde highlights,” she said.
Despite her achievements — and that hair — Van Cuylenburg was consumed with insecurity. She fought a serious battle with anorexia; her weight plummeted to 75 lbs.
“Looking in the mirror was not exactly my favorite thing to do,” she said.
Van Cuylenburg received treatment for the eating disorder and made a full recovery. At the age of 18, she moved to Los Angeles to pursue her lifelong dream of becoming an actress and found success: Before long she was appearing in advertisements, got a part in a children’s show, and was doing voiceovers for a major videogame.
And then came a devastating setback. One morning in the shower, Van Cuylenburg ran her hands through her hair and began to feel it fall out in clumps. She watched as her “calling card” circled the drain.

Searching for a Cure

Although life went on as usual — she attended an audition that very afternoon — Georgia would struggle to come to grips with her new reality. She and her then boyfriend began filming her journey and capturing her most vulnerable moments. It would later become a documentary and an ode to her experience called “Baby Let Your Hair Hang Down.”
While Van Cuylenburg did her best to face the world with a smile, she felt forced to hide her alopecia under a wig. Despite her efforts to accept her disease, she was desperate to get her hair back and searched for a cure. Van Cuylenburg went through aggressive acupuncture, which involved banging a hammer with seven needles on it across the scalp.
Van Cuylenburg would also endure another treatment called DNCB — applying an ointment that burns the scalp in hopes of stimulating hair growth. It was a treatment so painful that her head was at times left feeling raw.
Watch “My Extreme Affliction,” a “20/20” special series, Saturday at 9 p.m. ET.

New Hope

When the treatments didn’t work, Van Cuylenburg decided to shave her head. The experience, she later said, brought a feeling of “total freedom.”
But just as Van Cuylenburg began to accept her hair loss, her hair began to reappear and give her new hope.
In her documentary we see her standing in front of the mirror. She exclaims, “It’s coming back! Until two weeks ago I didn’t, wasn’t to believe, was I saw the fluff … It’s incredible and it’s going to keep coming back!”
It had seemed her prayers were answered: Van Cuylenburg grew back hair long enough to get her first haircut in two years.
But the haircut would bring out unexpected emotions. After leaving the salon she used to model for, Van Cuylenburg sat in her car and sobbed for the first time since her journey with the disease began.
“I didn’t cry when I lost my hair but I cry now that I got it back….Oh my God, I don’t have long hair anymore, I don’t feel beautiful anymore, I don’t feel sexy, I don’t feel anyone is going to look at me or notice me.”

The Gift

Van Cuylenburg didn’t have the luxury of dwelling on the length of her hair for long. Soon after that haircut, the disease struck again. Again, her hair fell out.
But this time, Van Cuylenburg refused to let her emotions be dictated by the cycles of the disease. For the first time she found herself able to embrace her alopecia. Instead of fighting against it she came out into the open and even stopped wearing her wig. She began to focus on the things that made her the happiest and started reaching out to others with alopecia. She began working with children in need of support and guidance. As she began helping them, they began to heal her.
Van Cuylenburg has been on a long and arduous journey. But now, instead of viewing her disease has a burden, she sees it as an amazing gift.
“For so many years of my life, I wanted to be known as the actress, or the funny girl, or the pretty girl,” she said. “And when I realized my strength was being honest…This is the thing that gave it to me. So if I’m known as the girl with alopecia, that’s a great thing.”

For More Information:
Children’s Alopecia Project

For information on the wigs Van Cuylenburg wears, visit CreatedHair.com.



On Sunday March 4, 2012 at Chelo’s Waterfront Restaurant One Masthead Dr, Warwick, RI
the Koehler’s, their family and friends held a fundraiser to help support the Children’s Alopecia Project (CAP). CAP is the only non-profit organization building self-esteem and confidence in children diagnosed with Alopecia Areata. There were amazing silent auction items and many exciting raffle prizes for both children and adults. Event also included Chelo’s famous food, live entertainment provided by Wayz and Means, cash bar and fun with friends.

300+ people attended and helped raise just under $14,000!!!

Thank you to all the attendees and of course the Koehler Family CAP Fundraiser Committee:
Melanie Koehler (co-chair) – Barbara Caswell (co-chair) and Craig Koehler, Janice Anderson, Jonathan Koehler, Kim Anderson, Tracey Morel & Carla Priebe.

Laurel’s Story…In October of 2010 Laurel was an 8 year old in third grade without a care in the world when her hair started falling out. Within a short period of time she had lost all her body hair and about 50 percent of the hair on her head. After doctors appointments, bloodwork and specialists we heard the words that changed our lives, “She has Alopecia Areata”. Laurel isn’t sick, contagious or in physical pain. She has an incurable autoimmune disorder that makes her suddenly lose her hair. With the help of the Children’s Alopecia Project (CAP), her Boston CAP Kids support group and attending CAP’s Alopeciapalooza camp in Ohio this summer Laurel’s outlook has changed. She has gone from being embarrassed to go to school, covering her head with hats, afraid of anyone knowing she has large bald spots to a child who is willing to talk about her disorder with confidence. Does she still have bad days? Of course, that is the unpredictable nature of Alopecia Areata. You never know when you will lose your hair or if it will grow back.

The Children’s Alopecia Project is devoted to raising awareness about alopecia, building self-esteem in children living with the life-altering hair loss disease, and it provides support for them and their families. CAP programs include support groups, Alopeciapalooza summer camp, CAP Kid Meetings, CAP Kid Library Program, CAP Kid Connections and CAP Kid Corresponders Program, and many other events and activities for CAP Kids and their families. Through the launch of their award-winning website with chats for parents and teens as well as educational resources and a directory of over 1,000 children with alopecia and a Facebook page with 7000+ members, CAP is also connecting families across the country and throughout the world. Visit their website at www.childrensalopeciaproject.org.

Original music composed and performed by Jeff Woytovich/Copyright © 2012 All rights reserved.

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