What happens at a support group meeting? That depends on the members, of course, and perhaps on the organization that's sponsoring it. Some groups just have informal discussions at every meeting. Some have lectures by doctors and other professionals. Some go out and participate in sports or community activities together. If you join a group and decide that its activities are not what you want, you may be able to find another group that suits your needs better.

What kinds of groups are out there?

Groups for children and teens with epilepsy
Groups for people with epilepsy are often divided by age. Children or teens have their own group where they can make friends and feel comfortable talking about the challenges they face every day. Once a group of youngsters is established, the members may stay together over many years, although newcomers usually are accepted quickly.

Often the ages of teen group members cover a pretty wide span of years because membership depends more on developmental age than on the calendar. This system seems to work well for most groups. Because everyone is at a similar level, they are all comfortable practicing their relationship skills and establishing friendships.

Teen groups often combine education and recreation. Many teens are poorly informed about epilepsy. Learning more helps them explain it to their other friends. Well-informed teens also may be better at taking responsibility for their own treatment, instead of seeing it as something inflicted on them by their doctor and parents.

Recreational activities by teen support groups are fun, but they also can be learning experiences. Many children with epilepsy have missed out on common activities. When a teen group goes bowling or plays pool, the members are practicing social skills and physical skills at the same time.

In some places, there are also groups for brothers and sisters of children with epilepsy, where they can learn about epilepsy and discuss their feelings and day-to-day problems with others who understand their situation.

As already mentioned, the activities of adult support groups vary widely. There's usually a social aspect, and some members may keep in touch between meetings. Comparing notes on problems and discussing epilepsy-related news stories is an informal means of education, though many groups also invite outside speakers to participate in some of their meetings. Some groups also encourage members to contact their representatives about laws concerning epilepsy, and groups may get involved in epilepsy fund-raisers. The interests and desires of the members determine the activities of these groups.

Where the population is large enough, groups may form around special interests: groups for seniors, groups for singles, groups for patients having certain kinds of treatment, and so forth.

Being the parent of a child with epilepsy is quite a different experience depending on the type and severity of the disorder, of course, but all have some common interests. These groups have many kinds of meetings, similar to the adult groups. New members are likely to find the advice of more experienced parents about the practicalities of dealing with local schools and other institutions especially helpful.

Sometimes parents whose children have certain types of epilepsy or other conditions that present special problems (such as Lennox-Gastaut syndrome or cerebral palsy) may form their own groups, where they can focus on the specialized information relevant to their needs.

Topic Editor: Steven C. Schachter, M.D.
Last Reviewed:12/15/06