Creating a Support Group for Psoriasis Patients
The Jackson Area Psoriasis Support Group in Jackson, TN, began in response to a community need brought to my attention after recovering from a severe flare of pustular psoriasis requiring hospitalization. As a health care provider who has lived with the disease since childhood, and experienced its progress from moderate to severe, I understood the importance of patients fostering relationships to encourage and support each other, especially in the tough times of a disease flare.
I have lived through the pain, itching and burning, and unsightly redness and flaking. I understand the discouragement and depression accompanying the disease. I have felt the stares. I have heard the comments and questions of a thinly veiled judgmental ideology that “surely I could do something to better control the disease.”
Knowing physician support is crucial to the success of any such group, I spoke with my dermatologist to get his opinion on the need of a psoriasis support group for the area. He was supportive and encouraged me to move forward with the idea. I then contacted other patients in the area whom I knew experienced the disease to assess their level of interest in a group.
After securing a central meeting place at the local hospital and setting a date, I posted flyers in local clinics and made public service announcements. I also created a Facebook page for the group for making announcements and to reach the public through social media.
Nine people attended our first meeting. These people included psoriatic patients, spouses, a dermatologist, and medical assistants. During this meeting, patients presented ideas they would like to have discussed at the meetings; possible ways to advertise and grow the group; and activities for promoting community awareness.
During the first year, we had guest speakers who educated the group on exercise and psoriatic arthritis, natural therapies for psoriasis, getting the most from you doctor visit, and other topics. The group joined with a local dermatologist and a rheumatologist during Psoriasis Awareness Month in August to educate the public on psoriatic disease. We also hosted a 5K on World Psoriasis Day in October to promote awareness and raise money for the National Psoriasis Foundation (NPF), which helps fund millions of dollars in research into psoriatic disease each year and supports patient education and advocacy. (For more information about the programs and services offered by the NPF and how you can become involved in your area, visit www.psoriasis.org.)
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