For people in Northern Kentucky and the Greater Cincinnati area diagnosed with alopecia areata, which causes them to lose their hair, there hasn't been much support to express concerns they have about living with the autoimmune disorder.
Now, the National Alopecia Areata Foundation has found a regional support group leader in L-A Stoper who is the Member Investments and Engagement Director at the Northern Kentucky Chamber of Commerce. Thanks to Stopa's initiative, the Chamber has agreed to host the first support group meeting there to be held on June 17.
"Here in the tri-state, there has not been any support groups or any kind of support as far as I can tell even through doctors and hospitals for people that are diagnosed with alopecia," Stopa said. "So what I decided to do late last year was to contact the National Alopecia Areata Foundation and I became the regional support group leader. This way, I have their support and their marketing to gather people in order to form support groups and also be an individual support for people that just want to chat with someone on the phone."
Stopa, who has been diagnosed with alopecia areata, said that most people assume that the autoimmune disorder mostly affects women, but she explained that all kinds of people are diagnosed with it and that each individual has unique concerns about the associated hair loss.
"It affects the genders equally, as well as children equally," she said. "Essentially, like any other auto-immune condition, it affects the hair follicles. That is the organ in the body that is attacked within people with alopecia areata. So, it is an equal-opportunity autoimmune condition."
Stopa expects the meetings to take on their own format as they begin rather than adhering to a strict agenda.
"Because I work here at the Chamber, and because we do a lot of events here, I think usually the best way to begin is to let people introduce themselves and let them talk about their own experience with alopecia," said Stopa. "Once people do that, I have a feeling that the discussion is going to be pretty organic. I think the topics are probably going to be things like the emotional fall out. For children, topics might be how they cope at school when other kids are being mean to them. For women, it's usually about what their options are for living with this. Do they want to wear a wig? Can they go without hair? Are there any surgical options? Does hair replacement work for them? So, I think that probably the group discussion is going to be a conversation of sharing stories, talking about the emotional issues surrounding individuals have when they lose their hair, and I think the third thing is going to be day-to-day coping. What do you do to cover your head or do you need to cover your head at all."
Now that a leader has emerged in the region to spearhead the meetings and take individual phone calls for people in need of support while living with alopecia areata, Stopa expects there to be quarterly meetings. If folks are unable to make those dates, they can call individually and talk with her on the phone.
"I think we will probably have these support group meetings quarterly, but if we get a big enough group of people and they want to meet more often, it could be more often, but I think we're probably going to do one every three months or so," she said. "It's been pretty crazy. I know that St. Elizabeth has put it on their website and it's on the National Alopecia Areata Foundation website. Because I work here at the Chamber, it's been really easy to spread the word. Now a lot of people cannot make that one date so a lot of people are calling me on the phone just to talk with me. I think the important thing is that alopecia areata is very, very common, and people in the area haven't had anybody to talk to. It's kind of nice to be able to pick up the phone and talk to somebody who has the same condition. My expectation is that most of the phone calls I'm going to get are going to be from women and parents of children that are diagnosed with alopecia areata."
The first meeting is scheduled for Wednesday, June 17 from 5:30 - 7:30 p.m. at the Northern Kentucky Chamber of Commerce (300 Buttermilk Pike, Ft. Mitchell). Interested participants should contact L-A Stopa directly to RSVP at 859-444-7976 or [email protected]
Written by Bryan Burke, associate editor