More than hair
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By JESSICA SCHREIFELS
Standard-Examiner staff
Shannon Cox helps other women cope with baldness
OGDEN -- When Shannon Cox, 34, goes out in public, many people think she has cancer because she is bald.
Once, when the Riverdale resident was eating at an Olive Garden restaurant with her husband, someone even paid for her dinner. "I thought, 'Oh, how nice,' and I asked who it was and they didn't want to say," Cox said.
"I'm sure they thought it was my last meal out with my husband. I wanted to say, 'Thanks, but I'm not dying.' "
Cox doesn't have cancer. Her baldness is caused by alopecia areata, a condition that causes all of her hair to fall out.
The condition occurs in about 2 percent of the population. However, it is difficult for people with the condition to find one another because many cover their heads with wigs or scarves.
Bald Girls Do Lunch, an organization for women with alopecia, is one way Cox found other women who have the condition.
Bald Girls Do Lunch was created by New York resident Thea Chassin, who has had alopecia areata since 1997. She created the nonprofit organization to help women struggling with alopecia meet each other.
"(Women with alopecia areata) are often hiding in plain sight," Chassin said.
"They can't find each other, and meeting other women who understand the same challenges is extremely beneficial."
Alopecia areata is a disease in which the immune system attacks hair follicles, causing hair loss. Hair generally falls out in clumps, but it can grow back.
The disease doesn't affect the person's health, but the emotional and social aspects can be difficult for some people.
The three stages of alopecia are:
* Alopecia areata, in which head hair falls out in clumps;
* Alopecia areata totalis, when head hair falls off completely;
* Alopecia areata universalis, when hair falls out from the entire body, including inside the nose and ears and on eyelids.
Cox has experienced all three stages of alopecia areata.
She realized she had a bald spot when she was 14. Her sister was cutting her hair and saw a quarter-sized bald spot on the back of her head.
Her father, who also has the condition, immediately knew what the bald spot meant and took her to the dermatologist.
Cox continued to get bald spots through her teen years, but treated them with steroids, first in the form of shots injected at the site and then an oral treatment.
After returning from a mission for The Church of Jesus Christ of Latter-day Saints when she was 22, she decided to stop taking steroids because it was causing too many health problems.
Her scalp hair completely fell out. It took 18 months for total regrowth.
Cox struggled with patches of hair falling out after the birth of her two daughters, Grace and Adelide, but grew all of it back. After adopting her son, Andre, from Haiti, she got hepatitis C and was bedridden. At that time, she got alopecia areata universalis and lost all of the hair on her body.
That was 18 months ago, and while the hair on her head hasn't grown back, Cox's eyebrows and eyelashes have grown back.
Having the condition used to be very difficult for her, Cox said.
"It was just emotional," she said. "I guess my definition of beauty was my biggest struggle with it. Bald women are not an acceptable thing in our society. That was my biggest struggle, but I've come a long way in accepting myself."
Getting involved with Bald Girls Do Lunch help her accept her condition. The organization travels to different cities, providing the opportunity for women with alopecia to meet with one another. An Aug. 12 lunch in Ogden has been set.
Chassin said the group has met in 27 cities in 15 states in the last 18 months, giving women the opportunity to share stories and encourage each other.
"They are just so relieved to find that there are other women just like them," she said. "Too often, they have felt very alone. Many times, women will say, 'My friends and family mean well, but they don't understand what I feel and what's it's like.'
"That's another key reason why I help women find each other and get together."
Cox first went to a lunch last year in Salt Lake City and decided for the first time to go bald in public. She generally covered her head, but felt the lunch was an opportunity to have other bald women for support.
She was a self-proclaimed wreck on the way there, but said the lunch was a catalyst for change for her life and her way of looking at herself.
"(Alopecia) doesn't rule my life in any way or define who I am," she said. "I'm a mom, I'm busy, I run a nonprofit organization to teach kids in Haiti. Those are the things that define me."
Add Your Comment
I also wear wigs at times but am grateful that I feel confident to do whatever feels most comfortable to me at the time. Toni, you should come join us at the dinner! You are welcome to wear your wig.