Epilepsy Talk

Teen Epilepsy Support Groups | May 7, 2012


In recent years, support groups that cater specifically to teens with epilepsy have emerged, started by hospitals, religious groups, and affiliates of the Epilepsy Foundation.

The number of support groups for teens with epilepsy is growing, but it is still small when compared to the many for adults with epilepsy and parents of children with epilepsy.

Support groups for teens with epilepsy vary greatly in the people they attract, the activities they sponsor, and the goals they create.

Most groups contain between 3 and 12 members — not a big, intimidating crowd, but enough that members can form friendships and have lively discussions.

Often, some of the members constitute the “core group” who joined when they were quite young and have matured and learned together with their friends in the group.

New members, many of whom are newly diagnosed with epilepsy are always welcome however and are quickly accepted.

Usually members are between 13 and 18 years old, but each group is unique in the ages of its participants.

Group leaders, often known as facilitators, are usually social workers or health care professionals with training in psychology. Because of their training, they’re very knowledgeable about epilepsy.

They also have vast experience with issues that are most important to teens such as dating, driving, friends, school, and parental involvement, so they are excellent at helping discussions along.

Important social issues often spark lively conversations. Sexuality, getting along with other kids, and employment are topics that often preoccupy teens who are limited by epilepsy.

Parental over-involvement in particular, is always a popular subject because the protectiveness of parents often harms more than it helps.

Members also discuss dating, driving, employment, and schoolmates. Initiating, developing, and maintaining friendships, all of which are important issues facing teens with epilepsy today.

Although these topics are sometimes hard to approach, the comfortable environment of a support group helps many teens with epilepsy to confide for the first time in people who understand and have experienced the same problems.

Here are some support groups listed state by state. Usually it’s good to call ahead to get details and meeting times.

And don’t forget to look up Adult Epilepsy Support Groups: http://epilepsytalk.com/2011/05/20/adult-epilepsy-support-groups/

 

CALIFORNIA

Epilepsy League of the East Bay

Support group meets from 7 to 9 pm., 3rd Wednesday. Sponsored by the epilepsy support group, located at the Kaiser Medical Center, 39400 Paseo Padre Parkway, Fremont, CA. For more information call: (800) 632-3532.

Epilepsy Support Group of Orange County, California

This is a Social Skills group for moderately to mildly affected teens with epilepsy 13 to 18 years old who would benefit from Social Skills instruction. This group meets monthly to discuss social barriers and successes in a safe and supportive environment. The Teen Club is facilitated by a clinical psychologist, experienced with social challenges facing teens with epilepsy. This group focuses on Self Awareness and Esteem, Building and Sustaining Friendships, Social Planning and Social Responsibility. Meets the 2nd Friday of every month, 7:00 to 8:30 pm. at the Hoag Irvine Hospital, 16200 Sand Canyon Avenue, Irvine, CA 92618. For more information call: (714) 916-0456.

San Diego

Epilepsy Foundation of America – Teen Advocates for Epilepsy. For students ages 13 to 17 interested in taking leadership in advocating for epilepsy awareness through projects and community events. Meets the 2nd Tuesday of each month (excluding December) from 4:00 to 6:00 pm. Location: Epilepsy Foundation Office, 2055 El Cajon Blvd., San Diego, CA 92104. Teens with any connection to epilepsy welcome. PLEASE RSVP. Contact: Hannah Williams, Event & Outreach Coordinator, (619) 296-0178.

University of California San Francisco

This support group allows teens affected by epilepsy to share their stories and concerns with others in similar situations. Education and resources are presented by guest speakers. Located at the UCSF Benioff Children’s Hospital, Ambulatory Care Center, 400 Parnassus Ave, Eighth Floor, Room A-888. Meets the 1st Saturday of the month from 11 am. to 12:15 pm. Call Maritza Lopez, nurse at (415) 353-2437 or email maritza.lopez@ucsfmedctr.org

CONNECTICUT

The Epilepsy Foundation of Connecticut — Friend to Friend Network

The Epilepsy Foundation of Connecticut holds summer camps for children and teens, educational programs, and support groups.This unique program links people living with epilepsy together so they can provide and gain support, knowledge, share their experiences, talk and listen, while furthering their understanding of epilepsy. Participating in this program is easy. Call: Allison Gamber at (800) 899-3745.

FLORIDA

Florida Department of Health Support Groups

Gives people a chance to learn more about epilepsy and the many challenges of living with epilepsy. Support groups also provide a time for people to talk with others who have this disorder. The groups are generally free and open to anyone with epilepsy. Some groups are also open to friends and family members. You do not have to be client of the Epilepsy Services Program to participate in a support group. Teen Support Group for Epilepsy meets the 2nd Thursday of each month from 6 to 7:45 pm. at FOF-Jacksonville Office, 5209 San Jose Blvd. #101, Jacksonville, FL 32207. Call Tina for more information at (904) 731-3752.

Miami

The Support Group for Teen Girls meets every Friday from 7:00 to 9:00 pm. for support and other activities such as sailing, movies, dinner, etc. For more information contact: Epilepsy Foundation of South Florida, 7300 North Kendall Drive, Suite 700, Miami, FL 33156. Or call (303) 670-4949, Ext. 208.

Miami

The Support Group for Teen Boys meets every Friday from 7:00 to 9:00 pm. for support and other activities such as sailing, movies, dinner, etc. For more information contact: Epilepsy Foundation of South Florida, 7300 North Kendall Drive, Suite 700, Miami, FL 33156. Or call (303) 670-4949, Ext. 208.

Palm Beach County — Teen Adventures Club

For teens with epilepsy ages 13 to 17 (18 if still in high school), meets one Saturday a month. Activities include museum visits, picnics, and mini golf. Locations vary due to activities. For more information call: (561) 478-6515 or email Susan at seddins@efof.org

ILLINOIS

Epilepsy Foundation of Greater Chicago

Shining Stars membership gives kids and teens with epilepsy the opportunity to bond on monthly excursions such as trips to bowling lanes or the zoo, and visits to the latest museum exhibits or local sporting events, including Chicago Bulls and Fire games. Members get to interact with others in a setting where epilepsy is the commonality and not what makes them different. http://www.epilepsychicago.org/programs-services/for-children/shining-stars/ There are also young adult support groups on the 3rd Saturday of each month at 2:00pm. Please call (312) 939-8622 before attending any group for the first time to confirm attendance and meeting details.

MARYLAND

Epilepsy Foundation of Maryland

A voluntary agency dedicated to the welfare of people with epilepsy and their families, ensures that people with seizures are able to participate in all life experiences and will prevent, control and cure epilepsy through services, education, advocacy and research. Address: 4351 Garden City Drive, Landover MD. 20785-7223. Phone: (800) 332-1000.

MISSISSIPPI

The Epilepsy Foundation of Mississippi 

A statewide, non-profit — Teens with Epilepsy — controlled or not, know that epilepsy will always be a part of our lives. Home Support Groups. The meeting location is located at the EFM Office, 2001 Airport Road N., Suite 307, Flowood, MS. 39232. For more information, call: (601) 936-5222.

NEW YORK

Epilepsy Foundation Northeastern New York — Albany

Teen To Teen is a social teen support group for teens with epilepsy ages 13 to 19. Meetings are held at the Foundation office, located at 3 Washington Square, Albany. Please call the office for the next meeting date. Registration is required. Contact Debbie at (518) 456-7501 or email at dbain@epilepsyneny.com.

Epilepsy Foundation — Binghamton

Are you a teen with epilepsy in the Binghamton area? You are not alone. The Teen Support Group meets in a separate room from the Binghamton Adult Support Group at Wilson Hospital, Puccini Building, 4th floor 33 Harrison St, Johnson City, NY, 13790. For more information, call: (800) 724-7930.

Epilepsy Foundation — Long Island

Teen Support Group: This group is made up of teenagers (13 to 20) who have Epilepsy. 506 Stewart Avenue, Garden City, NY 11530. Call: (516) 739-7733.

Epilepsy Foundation — Rochester

New teen epilepsy group. Come and meet other teens going through similar issues. Topics of discussion will include, but are not limited to, medication, driving, and school. 1650 South Avenue, Suite 300, Rochester, NY 14620. Please RSVP with Mike Radell at (800) 724-7930.

NEW JERSEY

Epilepsy Foundation of New Jersey

All teens face challenges and decisions about friends, driving, first jobs, and dating, among others. Teens with epilepsy face those same issues but their decisions may be a little more complicated. Many areas of their lives will be affected by epilepsy. Teens with epilepsy will also have difficulty explaining seizures to their friends because they wonder how they will react. Their friends may have little knowledge about epilepsy. Only when people are able to understand seizures are they able to help you in return. Meets on the 1st Thursday of every month, 6:30 pm. in the Conference Room at 20 Prospect Ave., Suite 800, Hackensack, NJ 07601. Call Andrea Racioppi, Associate Director Epilepsy Foundation of NJ at (800) 372-6510 for further information or questions.

OHIO

Central Ohio Epilepsy Foundation

The Young Adult Activity Club (YAAC) of the Epilepsy Foundation will now hold YAAC Support Group meetings. While club members have been meeting socially for some time now, many have said that they would like an additional time set aside strictly to discuss the challenges of living with epilepsy and the chance to offer support to their peers. Support group meetings will be held 6 to 8 pm. the 2nd Monday of each month. This group will target individuals ages 19 to 35. Meetings will vary from being informal with no set topic to meetings that will focus on relevant epilepsy or related issues. Located at 4700 Lakehurst Ct, Suite 225, Dublin, OH 43016. If you would like to be a part of this group or have ideas or questions, please contact Karen Brown at kbrown@epilepsy-ohio.org or call (614) 315-0572.

Tassels — Teens and Students with Seizures/Epilepsy Living Socially

A typical meeting is a place where you may enjoy a fun and relaxed social atmosphere, share support and encouragement, talk about the issues that concern you, with people who are in similar situations, give and receive information about epilepsy and treatments. For teens ages 12 to 17, their parents or guardians. Any friends or relatives that are interested are also encouraged to attend. Foundation staff and volunteers will be leading the meetings and any activities. Meets the last Tuesday of each month at the Epilepsy Foundation of Central Ohio’s office, 4700 Lakehurst Ct., Suite 225, Dublin, OH 43016. For further information call: (614) 358-0874.

PENNSYLVANIA

The Children’s Hospital of Philadelphia

Teens with Epilepsy — for teens age 12 to 20. A parents’ group meets at the same time. Call Claire M. Chee, RN, at (215) 590-1719.

SOUTH CAROLINA

Epilepsy Foundation of SC, Greenville Office. Call: (864) 631-1461 or email: efsc_greenville@charter.net

Epilepsy Support Group
Patewood office of Greenville Hospital System. Call: (864) 271-9900. Or email:  www.epilepsysc.org

TENNESSE

Southeast Epilepsy Foundation

Knowing that you are not alone is vital when dealing with epilepsy. Come meet other people in Chattanooga who have seizures. Come to teach and to learn. Come to encourage and to be encouraged. We meet monthly and discuss a variety of topics concerning epilepsy: medications, treatment, insurance and financial issues, legal rights, teen issues, SSDI, epilepsy in the schools and workplace, among many others. Join us the 1st Thursday of every month at 5:30 pm. at Siskin Hospital, One Siskin Plaza, Chattanooga, TN 37403. Outpatient Conference Room – 1st Floor. Call (423) 634-1772 for more information or to let us know that you are coming.

TEXAS

The Epilepsy Foundation of Central and South Texas

Located in San Antonio, the Epilepsy Foundation has developed a support group for teenagers ages 13 to 17 with epilepsy. Within this support group, teenagers can discuss their struggles with epilepsy with someone who knows exactly what they are going through. 10615 Perrin Beitel Rd., Suite 602, San Antonio, TX 78217. To find out more about meeting times, contact Elizabeth Ortiz  at elizabeth@efcst.org, or call (210) 653-5353.

WASHINGTON

Epilepsy Foundation Northwest

Sponsors an online support group and local face-to-face groups in Portland, Vancouver, Spokane and Seattle. In the Seattle area email: Mineko Sterling for email meeting times and reminders.

Resources:

http://my.epilepsy.com/info/teens_support

http://www.epilepsysupportnet.org/html/services.html

http://old.epilepsyfoundation.org/local/efneny/events.cfm

http://www.efnj.com/content/info/support.html

http://uwayreno.communityos.org/sys/profile.taf?profiletype=service&textonly=&recordid=167306&_UserReference=AC1E0208471A3E213CCABE9FE2544B083650


4 Comments »

  1. Hi Phylis, hope you are doing well! I am a little surprised, but never having the option to join a support group when I had epilepsy, I looked into it and is it me, or does Montgomery County NOT have a support group for teens/adults with epilepsy. I would really love to help/talk to/etc people with epilepsy–I would especially LOVE to have the opportunity to meet/speak with someone who has had the same/similar(right) temporal lobectomy. Its been so long since the surgery but I am worried/anxious/seems more than normal, short term memory ridiculously short(walk from one room to another sometimes and forget what I was going there for kind of short??) Just wondered if you knew of anything in Montco county. support group/how to form one? Have a great day!

    Comment by sunshinej716 — May 9, 2012 @ 11:12 AM

  2. Hi Sunshine,

    Here’s an article that may help you:

    Adult Epilepsy Support Groups

    http://epilepsytalk.com/2011/05/20/adult-epilepsy-support-groups/

    For example, if you’re in Montgomery County, Maryland: The Epilepsy Foundation of the Chesapeake Region is part of The Abilities Network Epilepsy Services Program which serves individuals, families, and the greater community with epilepsy education, information and referral services, assistance with medical issues, advocacy, support groups and scholarship support. Included are Anne Arundel County, Baltimore County, the Tri County Area (Calvert, Charles & St. Mary’s Counties), Frederick County, Harford County, Howard County, Montgomery & Prince George’s Counties, plus Western Maryland. http://www.epilepsy-foundation.org/services/epilepsy/

    If you’re in Montgomery County in NY: The Epilepsy Foundation of Northeastern NY serves 22 counties including Albany, Clinton, Columbia, Dutchess, Essex, Franklin, Fulton, Greene, Hamilton, Herkimer, Jefferson, Lewis, Montgomery, Rensselaer, St. Lawrence, Saratoga, Schenectady, Schoharie, Sullivan, Ulster, Warren, and Washington county. Their wide variety of programs are tailored to children, adults and their families. http://www.epilepsyfoundation.org/efneny/

    The Epilepsy Foundation of Eastern PA is a fabulous group. (EFEPA is my chapter.) The Director, Alli McCartin is a jewel. And the Educational Director, Sue Livingston is brillant. (I’m a facilitor at the Delaware Valley group, so I know!) And they’ve just opened a new branch in Bucks County. The EFEPA offers adults, children, parents, friends and family members an opportunity to share emotional support while gaining information and knowledge. Speakers are an important component to the support group process. (We have Dr. Joyce Liporace, an Epitologist from the hospital,with a renowned reputation.) Groups meet in Bucks County, Center City, Hazelton Area, Lancaster County, Monroe County Lehigh Valley and Wilkes – Barre / Scranton. http://www.efepa.org/programs/view/10

    I know there must be others. Just key into Local Affilates on the Epilepsy Foundation of America page and they’ll probably be able to help you. (Especially since virtually all of the support groups are sponsored by the EFA!)

    http://www.epilepsyfoundation.org/aboutus/Find-an-Affiliate.cfm?CFID=2817414&CFTOKEN=10688214

    I hope this helps…

    Comment by Phylis Feiner Johnson — May 9, 2012 @ 4:39 PM

  3. We cannot find a teen epilepsy support group for our daughter – she is 17. The only one close was through the childrens hospital in Atlanta GA and is was more from 5 – 12 year olds. Anyone know of any in the Atlanta area? Any teens want to start one?

    Comment by Michele — June 4, 2012 @ 11:30 AM

  4. I read that Dr. Thomas Burns, a neuropsychologist, runs a teen support group in Atlanta, Georgia. (I don’t exactly know where.)

    The Children’s Epilepsy Center in Atlanta seems to have subcategories of support groups broken down by age. http://www.oneplaceforspecialneeds.com/resources_local/resource_local_details.html?ID=1832

    There’s an interesting group I found called “Epilepsy Meet-Up” where you can meet other local people with epilepsy. Friends and family members are also welcome. On the site, there’s an interactive map of Epilepsy Meet-Ups around the world. (And if you want to start or find a support group, this could be a good place to know about!) http://epilepsy.meetup.com/

    And then, there’s “Add Coach” which provides advice on how to start and run a support group. http://www.addcoach4u.com/support/howtostartasupportgro.html

    Hope one of these helps!

    Comment by Phylis Feiner Johnson — June 4, 2012 @ 1:29 PM


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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I've also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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