If your town or city does not have the support group you need, take matters into your own hands! With the help of your local Epilepsy Foundation affiliate or your doctor, you might be able to start a support group for people your age to meet each other and discuss epilepsy.

Here are some ideas:

Set goals

Goals are the most important part of the brainstorming process. When deciding that you want to help start a group for teens who have epilepsy, start with a vision of what you want to happen. What is the goal or mission of the group that you propose? What kinds of programs do you want your group to have?

Rally support

Call your local branch of the Epilepsy Foundation. Call your family doctor, neurologist, or epileptologist. Do they know of a teen support group? Do they know of someone trying to begin a teen support group? Your local Epilepsy Foundation can put you in touch with a social worker or psychologist, with whom you can discuss your plan for a group. He or she may become the facilitator of your group.

Enlist a facilitator

It is very important that you find a caring, helpful, and knowledgeable person who can run your group. This can be a social worker, psychologist, neurologist, or someone in another profession related to epilepsy. Make sure that this person can make a commitment to the group.

Ask yourself questions about logistics

When will the group meet? Where? Do you have enough money? These questions are important to consider. If you are having trouble finding answers, contact a local hospital or the local Epilepsy Foundation to see if they can help.

Try to advertise

Ask your doctor and your Epilepsy Foundation affiliate to keep fliers advertising your group. Post notices in hospitals, newspapers, schools—places where you feel that people your age who also have epilepsy can find out about your group.

Get started

Plan your first meeting and write down what you noticed. How many people came? Is there too much discussion? Not enough? Did any problems come up?

Reconfigure

Now that you have identified the problems that you encountered, make the necessary changes.

Offer resources

Once the group has started to meet regularly, begin to compile lists of resources for members of your group. These resources can include information about medicines, activities that the group can participate in together, doctors with whom members can speak, and organizations to contact.

Understand the importance of feelings

When you are discussing topics, make sure that your group leader does not only focus on education and information. Make sure he or she allows and helps members of the group to discuss their emotions.

Participate in activities

Participate in the many activities and programs your town offers. Just like the groups described in the "Support groups" article, go to movies, restaurants, and beaches, for example. As important as discussion is, it's also important that members of the group get to know and be comfortable with each other.

 

Sit back

You've done an amazing job. Even taking the initiative to call your doctor or Epilepsy Foundation affiliate about a group is a huge step. Now you can let the group take its course.

 

Before you start, realize that not all groups are successful. If your group is not a huge success immediately, remember how difficult it is to begin a group that relies on the support of others. The participation of members of the group, social workers or psychologists, and your local Epilepsy Foundation are not under your control. Although it may not be easy, even a failure is a learning experience.

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

Welcome to the Wiki. This space is created for epilepsy.com members to share their own experiences and expertise to help refine and expand the discussion around important topics.

No members have yet contributed to this topic. If you are not yet an epilepsy.com member, register today to get started on this Wiki topic and the many other advantages of being a member. If you are a member and wish to be the first to edit this Wiki topic, please make sure to login, then click on the orange "Start Wiki" button at the top of this page. Or, learn more about Wikis.