Place Your Advertisement Here
All ad revenues support the mission of the Epilepsy Therapy Project
 
UPDATED: Thu, 11/08/2007 - 1:36pm

  • Epilepsy First Aid
  • Seizure Medication
  • Videos
  • Seizure Diary
  • Find a Doctor
  • Epilepsy Centers
  • Clinical Trials
  • Event Calendar

Place Your Advertisement Here
All ad revenues support the mission
of the Epilepsy Therapy Project

What to Expect

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.

Groups for adults with epilepsy

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.

Groups for parents of children with epilepsy

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


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.



Title Page Views
my.epilepsy.com Updates  
epi_help
topamax and weight loss  
alexia mom
kepra  
brian mattingly
Possible cure for absence seizures  
pdl1
Epilepsy and marijuana  
cjad234
Sexual Side Effects  
George R
How exactly do aura's feel  
WendyBendy
MEDICAL ALERT I.D.'s  
picnupthepcs
Over 40 Different Types Of Seizures - Revised  
spiz
electrical shock in head?  
Maggie
View all Forums

Title Posted
Depakine Chrono (natrium valproate) side-effects  
Ashvura
Rasmus' walk-off lifts Cards over Giants  
linhanyi
nice site  
lee
support worker people with learning disability  
bhing
my son sheldon  
gvalegirl
Meds do not stop all of my seizures  
wenko
Death of my teenage son  
shelly maire
Summer!  
Living with Epilepsy as a Teen
SOMEONE PLEASE HELP ME  
kimberanne
Pop Pop came to visit me.  
xaviersjourney
View all Blogs

Title Page Views
Inspirational Quote - My Own Personal Inner Thoughts  
Butterflygrl
my partial complex seizures  
Zanna1211
Topomax... The Dreaded.........  
Dr Jason
Brain Zaps, tics & twitches  
JudiS
side effects of phenobarb.  
pksmom
Feeling Sick  
JBJ1984
How can you tell if a sleep seizure happens?  
epl_controller
Tegretol XR and ANXIETY meds  
Butterflygrl
TYLENOL, AEDs & SEIZURES  
cmscribbles
Nonepileptic "Events" vs. "Seizures"  
teft
View all Blogs

Title Posted
Epilepsy does not control my life  
sweettmaidenn
Police Officer Discharged Regarding Seizures  
scott west coast
JAN 26,2006 CHANGED MY LIFE FOR GOOD  
kimberly1975
Concerned Bystander  
Bystander
temporal lobe epilepsy  
dennyxx82
Epilepsy is now part of my life  
Running Free
MY NEW LIFE WITH EPILEPSY!  
unicorn26
Track Day  
danniegirl
My son's seizures  
Magali
Who Knows?  
Sheri Lopez
View all Stories

Place Your Advertisement Here
All ad revenues support the mission
of the Epilepsy Therapy Project

Are your seizures usually

Less than 1 per year
15% (25 votes)
A few per year
23% (40 votes)
A few per month
24% (42 votes)
A few per week
19% (33 votes)
Several per day
19% (32 votes)
Total votes: 172

View results
View past poll results