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BYU-Idaho student explains coming to terms with alopecia

By Nate Sunderland

The Post-Register

Published: Saturday, April 28 2012 10:09 p.m. MDT

Whitney Ormsby talks with a reporter in the Crossroads center at BYU-Idaho, March 29, 2012. The Rexburg , Id. student has a condition called alopecia which has caused her to lose all her hair. It started when she was 7 and living in Brisbane, Australia.

Associated Press

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REXBURG, Idaho — Strolling across the crowded Brigham Young University-Idaho Crossroads food court recently, sophomore Whitney Ormsby drew more than a few stares.

Ormsby is starkly different from her peers, an atypical sight on a religious campus where extremes in fashion are frowned upon and most students look remarkably similar.

The tall 19-year-old is completely without hair, save for her eyelashes.

It's not a fashion statement, and contrary to the first impressions of many of her peers, Ormsby doesn't have cancer.

Ormsby has alopecia totalis, a hereditary autoimmune skin disease characterized by the gradual loss of hair, eventually leading to total hair loss, according to the National Alopecia Areata Foundation. There is no cure.

The Brisbane, Australia, native began losing patches of hair at age 7.

"It started off as an inconvenience, and progressively got worse," she said.

By age 11, the patches had gotten so bad that Ormsby opted to shave her head completely. Her hair never grew back.

It wasn't easy being a bald teenager, she said.

"I was at the age where you are growing up and you just want to be like everyone else," Ormsby said. "It was hard; I just wanted to have hair like everyone else did."

Initially, Ormsby wore bandanas and scarves around her head and briefly considered wearing a wig. She reconsidered, however, after her sister encouraged her to "just be herself." Her sister offered to shave her own head if Ormsby didn't get the wig.

"It made me realize that I'm the same person (with or without the wig) and it's not worth the hassle pretending I'm something I'm not," she said. "I am who I am."

Mother Karen Ormsby said she has always been impressed by her daughter's ability to come to terms with her disease and discover her own identity.

"Whitney has a really good understanding that who she is is not (defined by) what she looks like," Karen Ormsby said. "It's a credit to her that she learned that at such a young age."

Whitney Ormsby said she doesn't let the disease define who she is anymore.

"There aren't many 19-year-olds who know exactly who they are," she said. "I do, and I'm really grateful for that."

Ormsby does have some concerns about her future. She worries about being able to find the right man. She also fears her condition may impede her prospects for a career. Ormsby is studying to become an artist and would like to eventually teach.

"I want to teach, but it's something I feel I can't do on some levels, because little kids will point or ask questions, and I can't teach high school kids because they are mean," she said.

Teaching college is an option she's considered.

Ormsby also is considering working to raise awareness about alopecia and personal self-worth. She is especially interested in talking to young girls.

"Girls often have such amazing self-worth and they just don't realize it, and that makes me sad," Ormsby said. "I'd love to help tell people about their self-worth."

Ormsby believes sharing her story is one of the reasons she's alive.

"I'm here for a reason," Ormsby said. "Everything I've been given in my life has been really hard, but I need to do something with the knowledge I have. Otherwise I feel like I'm being ungrateful."

What is alopecia?

Alopecia areata is an autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It usually starts with small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis).

Alopecia areata affects about 2 percent of the population, including more than 5 million people in the United States. The disease is highly unpredictable and cyclical. Hair can grow back in or fall out again at any time, and the disease's course is different for each person.

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