A Talk with EB Support Group Leader, Connie Flowers, Part I

For some families, the concept of EB support groups may be unfamiliar, but there are several across the country that have been established by individuals who often have a child or spouse with EB, or who may have been diagnosed with EB themselves. Often the mission is simple: to bring others together who are living with the disease as patients, caregivers, and family members to help one another and provide support.

We recently spoke to one such support group leader, Connie Flowers of Aberdeen, N.C., mom to thirteen-year-old Christa, who was diagnosed with EB Simplex. Each year, Connie coordinates a meet-up of EB families across her state and will be hosting her next meeting early next month, June 4.

In this first of a two-part conversation with Connie, she shares general information about what attendees can expect at one of her group’s meetings.

EB Resource: (EBR): When did you first become an EB Support Group leader and how did it happen?

Connie Flowers (Connie): I started about four years ago. We had taken our daughter to a N.C. group meeting, and the woman in charge said that she could not continue to do it and that she was looking for someone to take over. So I just basically did.

EBR: Had you done anything like that before?

Connie: No, I hadn’t.

EBR: What has it been like? Has any of it surprised you?

Connie: Not really – maybe the time that it takes to do it. We have quite a few families in North Carolina, although we do have a lot of families who are members of the group but who have never attended a meeting. The hardest part is just trying to schedule meetings and finding a location for a meeting that is convenient for everybody, so they’re not driving a really long way. We have people on each side of the state.

EBR: Do you vary the location from month to month or change it every once in a while?

Connie: We only meet about once a year now. We used to meet up twice a year, once in the spring and once in the fall. Even now, we don’t have nearly the attendance we used to have. I guess people are just so busy that they don’t take the time to work it into their schedule or something. Now, I see who is coming first and pick a location convenient based on who will be coming.

EBR: How long do you usually meet up at one time?

Connie: Probably around 3 hours.

EBR: Do the kids take part in the discussion or are they catching up in their own part of the room?

Connie: They stay in the same area. We don’t have funds for someone who can watch the children. So families are just all together, but we usually try to have some kinds of activities for them to do. Last time, we had coloring books and a movie on a big screen, so they had something that they could do while the adults were chatting.

EBR: What do you feel the conversation at the meeting offers the families that do take part?

Connie: For some of them, I think it offers them peace of mind knowing that it is manageable. They see my daughter who has EB Simplex, has managed the disease and how she leads a normal life, and I think that’s encouraging to the other families because they like to see her and how well she does. I also think it’s helpful for problem-solving. Sometimes they’ll be having a problem and they can tell other families who can share what worked for them and they can try that, as far as blistering and wound care, and areas like that. Sometimes I think the kids get more out of it than the adults do. All of the EB kids have a bond, and it’s very unique. They can meet each other for the first time and you can just tell that there’s this bond there, because for a lot of them, they’ve never seen another child like them before. I think they need it.

EBR: How long ago did you have your last meeting?

Connie: It’s been a while, but our next meeting is June 4.

EBR: If someone in the NC area is interested in being part of your upcoming support groups, what do they need to do to sign up?

Connie: They just need to email me at c_p_flowers@yahoo.com and then I’ll contact them and send them the location and time. We’re currently working on the location.

Next week, in Part II, Connie talks about what topics come up most often her EB support group meetings and what she personally takes away from the experience.

Related Posts:

The Importance of Connecting

Stress Management for Caregivers

A Q&A with EB Friends Creator, Chris Pez Matthai, Part I

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