CHAPEL HILL — Liz Shipman was 16 when she first noticed a few bald patches on her head. At 19, when she was a sophomore at UNC-Chapel Hill, she lost every lock of what was once her long, blonde hair.
The drastic change in her appearance was a blow that went well beyond vanity. She found herself explaining her condition, a little-known autoimmune disorder called alopecia areata, to friends and strangers, sometimes several times a day.
She was stopped at grocery stores by people eager to talk about cancer, which they assumed was her illness. She felt the painful difference in the way people reacted to her with and without her wig.
Her hair grew back. But when it fell out for a second time last year, Shipman turned from despair to action, forming the state’s first Alopecia Areata Foundation Support Group.
As leader of that group, she has become the point person for people across the state who suffer from the condition, offering them a chance to connect with one another during monthly meetings in the Triangle and answering their calls and emails.
Most of the 30 or so people in her group are much older than her – a fact that didn’t deter Shipman, who started volunteering as an emergency medical technician as soon as she graduated from high school. She recently started a separate group for children with alopecia areata and their parents.
“It is a very lonely disease and most people never come out of the closet to anyone,” says Susan Goldhaber, who has attended the support group. “Liz has found ways to tell people that they are not alone and spends endless hours talking to people and finding ways to support them.”
Work as an EMT
Shipman, 22, grew up in Utah, where she took ballet lessons and was active in theater productions. But her lasting love was skiing, in particular downhill racing – a hobby that was disrupted when she moved to Chapel Hill in time to start high school.
Shipman planned to return to the Northwest for college, but changed her mind when she was accepted to UNC-Chapel Hill. She had applied at the last minute.
She’s now a junior studying biology after taking a year off of school to earn her credentials as a paramedic, which she has almost completed. She was still at East Chapel Hill High School when she came across the idea of being an EMT, happening upon an information session about being a first responder.
She stayed to listen, and soon had signed up for a medical responder class. She finished her EMT training by the time she graduated, and started volunteering with the Orange County Rescue Squad right away.
Still active there, she does regular shifts responding to emergencies, a career she hopes to continue professionally after she graduates.
Usually without a wig
An estimated 2 percent of U.S. population has some form of hair loss due to alopecia areata, according to the National Alopecia Areata Foundation, yet few people recognize the disorder by name, and the condition is poorly understood. The hair loss can be cyclical or permanent, and treatments aren’t always effective.
Shipman didn’t even notice the first patches of hair to fall out; her hairdresser did. For a few years, she could keep up with the bald spots by styling her hair different ways.
“I would wear my hair the same way for a couple of weeks and something else would fall out and I’d have to reconfigure,” she says.
The patches would come and go, becoming more severe, until in early in 2011, she was bald. A year later, when it fell out again, she lost nearly all of her body hair as well.
Treatments that suppress her autoimmune system have helped her regain her hair, which is now a few inches long. She has mixed emotions about this success, which she knows might be temporary.
“I’m thrilled of course, but I had also begun to build my life around being bald for the rest of it and now I don’t know what to expect,” she says. “I’d almost rather get off the ride at this point.”
Being bald brought difficult and unexpected choices, foremost being whether to hide her bare head. Many people with alopecia areata are careful never to be seen in public without a wig.
But for Shipman, such a choice didn’t mesh well with her lifestyle. She loves riding her moped and doing outdoor activities, and a wig seemed impractical for an EMT.
“The decision came down to, ‘Are we going to do something that’s not fitting with our character today so that we can have hair?’” she says.
She would still wear one of her wigs sometimes, such as special occasions, or when she has a job as a receptionist, when her visibility would have prompted so many questions. She knows going without one isn’t for everyone.
“I’ve had to personally educate everyone in my life about it, and that’s been exhausting,” Shipman says. “For a lot of people who wear wigs, it’s kind of like a shield from those questions.”
It’s one of the topics she tackles during meetings of the support group, whose membership has grown steadily over the past year.
Catering to individual needs
The children’s group just started last month, and she’s planning ways for both groups to meet, all together and by pairing individual adults with children. But she says their needs are quite different.
“Most of my adults are worried about dating if they’re not married, and how to tell their co-workers,” she says. “For the children, I think having friends that are also bald is the best thing you can do for them.”
She fields calls on a wide range of topics, adding to the impressive store of knowledge on alopecia areata she started amassing soon after learned the reason for her hair loss.
A recent caller asked where she might get her eyebrows tattooed; Shipman is compiling a list of local tattoo parlors, wig shops and other useful services. Others have questions about possible remedies such as changes in diet, and Shipman does her best to find accurate answers.
She says she can’t claim to have truly accepted her plight. But the lessons she has learned about the shallowness of appearance will last no matter the length of her locks.
“I don’t think I’m ever going to be good with this,” she says. “But I think it’s important for me to learn all of the good things that this has to teach.”
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