Aussie Teen Travels Far to Meet Others With Her Rare Disease

Dominique van Hoof, who suffers from rare auto-immune conditions called alopecia areata, totalis, and universalis left her Queensland, Australia home to attend the Annual Conference of the National Alopecia Areata Foundation (NAAF) in Oakland, California, June 21-24. Dommie, who will turn 16 this Sunday, is looking forward to meeting other kids and teenagers with alopecia. In my whole life, Ive only met one other kid who had it -- and theirs was different from mine," she explains, At the NAAF Conference Im going to get together with more than a hundred young people. Its going to be Awesome!"

Dominique van Hoof, who suffers from rare auto-immune conditions called alopecia areata, totalis, and universalis left her Queensland, Australia home to attend the Annual Conference of the National Alopecia Areata Foundation (NAAF) in Oakland, California, June 21-24.
Dommie, who will turn 16 this Sunday, is looking forward to meeting other kids and teenagers with alopecia. In my whole life, Ive only met one other kid who had it -- and theirs was different from mine," she explains, At the NAAF Conference Im going to get together with more than a hundred young people. Its going to be Awesome! I'm so excited I can barely sleep now. My friends are wishing me luck and I'm going crazy. I can't wait!!!!"
Nearly two percent of the population is affected by various forms of the incurable disease alopecia, in which the bodys immune system attacks the hair follicles and may result in partial or total hair loss. A majority of cases first appear in children and teenagers. When first diagnosed, most people have never even heard of the disorder, and fewer still have met anyone who has it.
My eight year-old son lost all his hair before he was two, and I was shocked to learn that there really wasnt anything that could be done," explains Helen Runnells DuBois, founder of alopeciaKIDS.org. I wanted to talk with someone who had been through this before me. I created alopeciaKIDS.org so that other mothers would have a place to go for information and to find support."
The open, on-line alopecia support community at www.alopeciaKIDS.org has been in operation for just over six months and has provided information and services to nearly 40,000 visitors from 64 countries.
Dommie participates in the alopeciaKIDS Ambassadors program, in which young people with alopecia pledge to share their personal stories to help other alopeciaKIDS, their teachers, classmates, and friends learn about alopecia, and to raise public education and awareness about the disorder. The entire van Hoof family helped raise funds for the trip from local businesses and schools. AlopeciaKIDS.org is also providing assistance.
I wrote a poem about my alopecia," says Dommie, I think Ill read it during NAAFs talent contest." Its a first trip that far from home for Dommie and her mum", Karen, who just arrived in the U.S. It was really exhausting, about 14 hours in the air, I think," said Dommie, and we arrived in San Francisco three hours before we took off!" The rest of the family—dad Hubert, and Dommies twin sister, Katrina, remained at home in Fortitude Valley, Queensland. Katrina is not affected by alopecia.
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alopeciaKIDS.org, Inc., a virtual non-profit organization operating without office space or paid staff, hosts an internet-based alopecia support community at http://www.alopeciaKIDS.org/ dedicated to providing information and support—as well as an on-line gathering place—to help fulfill the unmet needs of kids and families living with alopecia. For more information about alopeciaKIDS.org, visit the website or e-mail: moderator@alopeciaKIDS.org.
The mission of the National Alopecia Areata Foundation (www.naaf.org) is to support research to find a cure or acceptable treatment for alopecia areata, to support those with the disease, and to educate the public about alopecia areata.

alopeciaKIDS.org, Inc., supports the efforts of The National Alopecia Areata Foundation, but is not affiliated with NAAF. The poem Dommie w