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Fostering assistance for alopecia sufferers

Founder of support group looks to help people with the incurable hair-loss disease.
Friday, April 9, 2004 | 12:00 a.m. CDT; updated 3:34 a.m. CDT, Sunday, July 6, 2008

There is a group of people that gathers in room 3003 at the University Physicians Medical Building five times a year. Sometimes they come wearing hats, other times scarves, but most of the time, they wear wigs in a bid to mask their baldness.

Together, they make up the Mid-Missouri Support Group for Alopecia Areata. Alopecia areata is a highly unpredictable autoimmune skin disease resulting in the loss of hair on the scalp and on the body. The group of 20 members was founded in January 2001 by Kathleen Lively. She believes there are people out there with the disease who might not know of this group.

“There’s definitely got to be people out there,” Lively said. “I probably don’t think I’ve done enough to make people aware of the group.”

In fact, Lively has exhausted all means of publicizing the group. She has contacted the support group in St. Louis and the National Alopecia Areata Foundation (NAAF) for names and has sent out e-mails. She has put her information on the NAAF Web site and sent out letters to dermatologists in Columbia. She leaves business cards and brochures at clinics every opportunity she gets.

At these group meetings, a guest speaker comes occasionally to address members’ questions. Dana Ward, a dermatologist at University Hospital, attends the meetings once a year as a medical adviser. However, most of the time, all they do is share their feelings on having alopecia areata.

Kristiane Nagler Todd is one of the members who enjoys the meetings. Todd, a dentist, developed the disease six months after having a child. She was 34.

“I’ve met some wonderful friends at the group,” Todd said. “It has a really relaxing atmosphere.”

Her sentiments are echoed by Kelley Green, the youngest member of the group at 22 years old. She was 14 when she developed alopecia areata. Her mother has the disease, too.

“I didn’t have anyone my age or anyone outside my family to talk to, so I guess this is where the support group comes in,” Green said.

Lively said emotions may run high at these meetings. “Some may feel discouraged because they don’t have hair. This is especially for women who put emphasis on beauty,” she said.

“I cried a lot when it was happening,” Todd said. “And in a way, losing my hair was a relief because I didn’t have to wait, not knowing what will happen.”

Physical appearance, and hair for that matter, may be equally important for men, too.

“You know, if I could have hair right now, I would say, ‘Yeah, I love it,’” said Rob Eichelberger, a barber who developed the disease at 26.

His occupation has given him a different perspective on alopecia areata. “Whenever I cut hair, I think these people are really lucky they have hair,” he said.

Green also believes the disease has made her appreciate the little things in life that others often take for granted.

“Not having hair makes you think about the person for who they are, not what they look like,” Green said.

For those with children, like Todd and Eichelberger, the stigma of being bald may be the least of their worries. As alopecia areata is a hereditary disease, they fear their children may get it, too.

“I have two girls, and sometimes I think I don’t know if it can happen to them,” Eichelberger said. “I hope they don’t ever have to go through it.”

However, most of the members have accepted the disease as a part of their lives.

“I’m still doing the same things as before. The only thing now is that I must watch for the wind,” Todd said with a laugh.

The members do not seek treatment because of its temporary effect. This means they might remain bald forever unless a cure for the disease is found.

“Having the disease made me think: when you are young, you think you are invincible,” Eichelberger said. “But we are actually vulnerable, and things happen to us.”

For more information, call Lively at 449-3038 or e-mail her at klively8@mchsi.com


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