A support group can be a gathering of family, friends, or persons with lupus or a combination of all three. Typically, the group gathers regularly to discuss issues surrounding their disease and provide mutual support and exchange coping skills. But the reasons people join support groups can vary greatly from individual to individual.
Some may look for a better understanding of their disease. Others will feel in crisis or are hoping for help with specific struggles – from caregiving to dealing with flares. They may be looking for advice on a particular subject or just want to be with people who are having similar experiences. The group provides that opportunity.
If you are interested in joining a support group, your first step might be to determine what is available in your area. You can do this a number of ways, including contacting your healthcare provider, contacting a local hospital and speaking with the patient advocate, or by using the Internet and other reference resources to determine what’s around.
If you discover that there isn’t a support group available, you might consider starting one. If you want to take on that challenge, here are some suggestions, tips and steps to get your group started and established.
Starting a support group is challenging and requires a high level of commitment and responsibility, as it is up to you to get the group off the ground, recruit members, and organize meetings and events. Make sure you are ready for the responsibility.
So as to ease the work, find at least one other person who is just as dedicated as you are at making the group a success. Share the workload with that person. To find members in your area, consider reaching out to patient advocates, social workers familiar with lupus and lupus patients, physicians, counselors. You might also consider advertising your support group at the local library and other public arenas.
Make sure, from the outset, that you want to be in charge of a support group and not just a member of a support group. More so, understand the reason why you want to start a group and what you hope your members will gain from gathering. Know what type of meeting will best meet your group’s needs – open discussion, social gatherings, formal speakers and programs, or a mix of all of the above?
Not necessarily as hard as it sounds. Local libraries, government buildings, churches and schools might offer free meeting space. Healthcare facilities, like hospitals, might also be an option (and a source of speakers). Always keep accessibility in mind.
Your first meeting with your group will likely be a clerical one, as you and the members of you group get to know one another, discuss what your goals are, come up with a set date and time for future meetings, and determine what kind of structure you would like best (do you want a governing body, for example?).
Make sure you communicate regularly with your members. One way to do this might be by through a newsletter, either via e-mail or printed out – depending, of course, on how big your group grows. For smaller groups, a note or e-mail that keeps everyone up-to-date and connected is probably the best policy.
SUPPORT GROUPS NORTH AMERICA
Lupus Ontario Support Group Contacts, Meetings & Events
Toronto & GTA Region
Toronto West Support Group (Mississauga Area)
North Toronto Support Group
Cathy Ferren-Palmer, Support Group Leader
Durham Support Group
Shannon Crawford, Support Group Leader
Markham Support Group
Downtown Toronto Support Group
Toronto Beaches Support Group
Where: Community Centre 55
97 Main Street
When: Monday June 14, Sept 13, Oct 11, Nov 15
Thursday July 8, August 12
@ 6:30 PM to 8:30 PM
Eastern Ontario Region
Lindsay Support Group
Ottawa Central Day Group
Ottawa West End Evenings
Central Ontario Region
Barrie Support Group
Marlene Burgess, Support Group Leader
Collingwood Support Group
Norfolk County Support Group
Northern Ontario Region
Dryden Information Group
Randi Nielsen and Barbara Babcock
Brenda Seguin, President
Heather Knoll, Vice President
Sault Ste Marie Branch and Support Group
Ruth Tarvudd, Support Group Leader
Andrea Goral, Support Group Leader
South Central Ontario Region
Hamilton Support Group
Wed 15th Sept, 2010 @ 7:00pm - 9:00pm
Bay Gardens Community Room
947 Rymal Road East
Hamilton, ON, L8W 3M2
Western Ontario Region
Bolton Support Group
Provincial Teen & Young Adult Support Group
SOURCE: Copyright 2009 Lupus Ontario
UNITED STATES of AMERICA
LUPUS FOUNDATION OF AMERICA
LFA CHAPTER LOCATIONS
Please Call The Chapter Nearest To Your City Or Visit Their Website To Find Support Groups In Your Area
LUPUS FOUNDATION OF NEW ENGLAND
Area support groups meet on a regular basis by professionally trained facilitators where people can discuss lupus, new treatment and strategies for living well with the disease.
If you would like to start a support group in your area please call Jenny Reyes Thomas, Administration and Programs Manager at 508-872-5200.
CONNECTICUT CHILDREN'S MEDICAL CENTER
HOSTS TEEN LUPUS SUPPORT GROUP
WHEN: 1st Wednesday of Each Month
WHERE: Connecticut Children's Medical Center
Location is 2L (Specialty Medicine Conference Room) at CCMC
282 Washington Street, Hartford, CT 06106
CONTACT: Maria Sanzo 860-545-9390
CHICAGO APOSTOLIC CHURCH OF GOD HOSTS
"Living Life" With LUPUS SUPPORT GROUP
TIME: 12 Noon Til 2PM
WHEN: First Saturday Of Every Month
WHERE: Apostolic Church of God
6320 S. Dorchester
Chicago, Il. 60637
NEW HANOVER COUNTY PUBLIC LIBRARY HOSTS
Wilmington Area Lupus Support Group
WHEN: Third Tuesday of Each Month Beginning January 18, 2011
WHERE: New Hanover County Public Library, Northeast Branch
1241 Military Cutoff Road
Wilmington, NC. 28405
Contact: Tammy Scott For More Information @ email@example.com
WILSON MEDICAL CENTER HOSTS
Wilson County Lupus Support Group-BUTTERFLIES
WHEN: 3rd Saturday of Each Month
WHERE: Wilson Medical Center
1704 Tarboro St.
Wilson, NC. 27896
Contact Tameka Mitchell For More Information @ firstname.lastname@example.org
Support Groups, Online Support Groups, Blogs, Forums, And Social Networking Are All Ways To Share The Burden LUPUS Has Bestowed Upon You
Whether You Host Your Own, Are Active In Others, Or Just Visit A FaceBook Group
Please Share The Load And Know You Are Not Alone