Taking the first step: Support groups empower
From March/April 2005 Psoriasis Advance
Do you feel like others close to you—friends and family, perhaps—can't entirely understand what it's like to live with psoriasis or psoriatic arthritis?
Perhaps you know someone who has psoriasis and you need advice from other psoriasis caregivers or supporters.
Or, maybe you're ready to take a step toward educating others about psoriasis—and you understand that working in a group may be the most effective solution.
If so, you might want to consider joining or starting a psoriasis support group in your area. Support groups can make a tremendous difference in the lives of those affected by psoriasis and/or psoriatic arthritis—in fact, the National Psoriasis Foundation began in 1968 from the support group led by founder Beverly Foster Halprin.
The Psoriasis Foundation offers an affiliated support group program, comprised of more than 25 groups nationwide. They have agreed to follow Foundation policies and procedures. In return, the Foundation offers information, support, materials and training to the groups.
Getting involved
Whether you are interested in starting your own psoriasis support group or finding a group in your area, the Psoriasis Foundation can help. Start by logging onto www.psoriasis.org/community/support/ to learn more.
When you attend your first meeting, expect to meet a wide range of people. Psoriasis and psoriatic arthritis affect people of all ages, races and backgrounds. Having one or both of these diseases is more than enough to connect you to others.
National Psoriasis Foundation affiliated psoriasis support group leaders are specially trained and screened by the Psoriasis Foundation, and serve as facilitators, not directors, of the group. The goal is to provide a venue for confidential, nonjudgmental interaction, and an opportunity for each member to participate as fully as possible.
"It's nice to be able to meet people who understand the experience of having psoriasis," says Kimberly Patton, from Vancouver, Wash., a member of the Portland, Ore., support group.
You'll also bond as you gain and share information. "There's comfort in meeting others who understand what you're going through," says Ed Madara, a training consultant who works specifically with support group leaders and volunteers. And it feels good to help others, he adds. "There needs to be recognition that you're giving back to others who have the disease."
Support in three ways
All Psoriasis Foundation affiliated support groups provide emotional support; some provide additional options for connection through outreach and action activities.
Emotional support groups are the most common type of group. They offer confidential, nonjudgmental interaction, information, speakers and literature about these diseases and related topics. They also offer the opportunity for forming new relationships for support outside of the group.
Jody Kim-Eng, leader of a new affiliated support group in the Bay Area, started an emotional support group because she remembered the despair she felt when first diagnosed with psoriasis and psoriatic arthritis. "Helping others to find that sense of community and opportunity for information and emotional support also helps me. I feel like I'm gaining control over my own diseases, instead of letting them control me," she explains.
Outreach support groups are active in at least three of the following areas—community meetings, medical outreach, advocacy programs, health fairs, speaker bureaus and other community-based health educational programs. Outreach groups also act as a conduit for fund development on behalf of the Psoriasis Foundation.
Kathleen Gallant Brickley, in Pittsburgh, Penn., leads this type of support group, and has coordinated educational seminars on psoriasis, lobbied for increased funding for research and worked health fairs. "I have visited more than two-dozen dermatologists in Pittsburgh this summer," says Brickley, "introducing myself and giving them educational material about psoriasis, the National Psoriasis Foundation and my support group."
Action support groups take an extra step through an active doctor outreach program and a volunteer program with an assigned network leader.
David Bruce, a Psoriasis Foundation affiliated support group leader for Dallas/Fort Worth, Texas, sees the group as a way to educate more people about psoriasis and psoriatic arthritis. The members visit dermatologists and rheumatologists in the community to make them aware of the support group and the Psoriasis Foundation. Bruce has also spoken at university classes to educate medical students on psoriasis. "Without hearing this kind of information, these students had no idea what psoriasis patients deal with on a daily basis," he says.
For more information on starting a support group, go to www.psoriasis.org/community/support/ or contact us at 800.723.9166. You also can attend the 2005 National Conference for support group leader training.
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