About Us
Support Groups
The Lupus Foundation of America, Greater Cleveland Chapter Inc., sponsors support groups for two reasons.
- To assist and support group members in developing skills to deal with their emotions and feelings.
- To foster open discussion of how lupus affects our lives
A support group is not designed to provide professional psychotherapy or counseling. Almost all Greater Cleveland Chapter support group facilitators are volunteers, who have a desire to help others. These volunteers are not always trained professionals, but all support group facilitators receive special training by professionals to provide a caring non-threatening environment. Confidentiality is a must! Any information that might individually identify a group member cannot be discussed/revealed outside the group. The opinions and statements expressed by the group members do not necessarily reflect the opinions or positions of the Greater Cleveland Chapter.
What is a Lupus Support Group?
A lupus support group is an informal gathering of persons with lupus, their families and friends. It is a place where persons with lupus can share their experiences and ask questions. Most discussions focus on the "how-to's" of living with a chronic illness.
It is a safe place for people to learn, share and help. Individual differences and confidentiality are respected.
A Support Group:
- Fosters the sharing of feelings, hopes and concerns among people with lupus, family members and friends.
- Promotes education about lupus
- Provides a positive social experience for people who share a common illness.
How Does The Lupus Support Group Work?
Although there is not a specific program, a member of the Lupus Foundation is always present to facilitate the meeting and provide information about lupus and the services offered by the chapter.
Typically, everyone sits in a circle and begins by introducing him/her self. The discussion follows the inclinations of those present. Often someone has specific questions regarding the disease and/or medications. Other times attendees may bring up problems they have with their family, employment or the medical advice they have been provided. However, persons with lupus are encouraged to learn as much as they can about lupus and to work with their doctors to find the most effective treatment.
Sometime people come because they need to tell their story to sympathetic ears, while others are there just to listen. Some attend the support group regularly, while others' needs are met in one or two meetings.
Why Are Support Groups Needed?
Learning to adapt to a chronic disease is difficult at best. A support group can offer tips ranging from dealing with disability benefits to handling the side effects of prednisone. But the most important role of a support group is to let people with lupus know they are not alone. While one cannot control the disease, support group members can help each other gain control over the feelings of isolation, anger and fear. Persons with lupus are not helpless and they can support each other in dealing with the day-to-day challenges of the disease.
Do I Have To Have Lupus To Attend?
No, In fact, lupus spouses, other family members and friends are encouraged to come to show their support of persons with lupus. Often it is the person with lupus who is not ready to accept the disease and family or friends come alone to receive information and help. People who are suspected of having lupus, but have not been officially diagnosed, are also welcome to attend the lupus support group. These persons need support in coping with the uncertainty.
How Does One Join The Support Group?
All meetings are free and open to the public. People are encouraged to come when they feel the need. You can find current support group information here.
Support Group Leaders
Suzanne Tierney
Brecksville Support Group Leader
David Wonsetler
New Patient Education Counselor
Linda Knepper
Middleburg Heights Support Group Leader
Jill Burkhart
Westlake Support Group Leaders
Daphane Copland
Maple Heights Area Support Group Leader
Rick Csoltko
Men's Support Group
Darlene Bostick
co-facilitator for the Maple Heights group
Beverly Humphrey
co-facilitator for the Brecksville Support group
Susan Woodard
10 Steps to Living with lupus
Diane Dustman
Greater Cincinnati Area
Pam Mendicino
Willoughby Area Support Group Leader
Shannen Nelson, RN BSN, CCRC
Cincinnati Children's Hospital Medical Center
