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.”
Making Connections
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.)
Article continues on page 2
Challenges to Consider
Some challenges the group had the first year included finding a suitable meeting place with easy access, and finding the right balance of meeting frequency. The group did not grow as rapidly as I initially expected and after a time, interest seemed to dwindle. Even the most dedicated members of the group had difficulty attending monthly meetings and asked if we could have meetings less often.
In response to these challenges, the core members of the group got together to discuss possibilities. We decided for our second year, we would host quarterly meetings and ask local dermatologists and rheumatologists to participate by hosting a meeting at their offices. We asked the hosting physician to speak about a topic of interest to psoriatic patients. Three physicians’ offices in the area agreed to participate in this plan.
Meetings were planned in advance and were advertised through flyers, radio, TV interviews, public service announcements, and social media. Topics included new treatments not requiring a shot and what is psoriatic arthritis. Currently, there is renewed interest in the meetings and the group has gained new members.
A Multitude of Benefits
Despite the challenges encountered, several group and individual benefits were noted over the past year from the support group. Bringing people with a common disorder together to compare notes and share stories has proven effective in increasing the morale of individual patients and creating community awareness. In addition, individuals within the group benefit from learning about new medications and treatment options, as well as practical ways for coping with daily issues of living with a skin disorder. Casual conversations among the members has helped to decrease feelings of aloneness and opened opportunities for members to talk to other patients with psoriasis and share information about the disease.
In the future, the support group plans to continue quarterly meetings to increase education among patients who suffer from this disease. Planned topics include new biologics, current research studies, and how to manage stress. Another 5K is being planned and will be held during Psoriasis Awareness Month. We will continue to work with the NPF to create awareness, educate, and bring hope to the psoriasis community.
Ms Medlin is an associate professor at Union University School of Nursing in Jackson, TN.
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.”
Making Connections
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.)
Article continues on page 2
Challenges to Consider
Some challenges the group had the first year included finding a suitable meeting place with easy access, and finding the right balance of meeting frequency. The group did not grow as rapidly as I initially expected and after a time, interest seemed to dwindle. Even the most dedicated members of the group had difficulty attending monthly meetings and asked if we could have meetings less often.
In response to these challenges, the core members of the group got together to discuss possibilities. We decided for our second year, we would host quarterly meetings and ask local dermatologists and rheumatologists to participate by hosting a meeting at their offices. We asked the hosting physician to speak about a topic of interest to psoriatic patients. Three physicians’ offices in the area agreed to participate in this plan.
Meetings were planned in advance and were advertised through flyers, radio, TV interviews, public service announcements, and social media. Topics included new treatments not requiring a shot and what is psoriatic arthritis. Currently, there is renewed interest in the meetings and the group has gained new members.
A Multitude of Benefits
Despite the challenges encountered, several group and individual benefits were noted over the past year from the support group. Bringing people with a common disorder together to compare notes and share stories has proven effective in increasing the morale of individual patients and creating community awareness. In addition, individuals within the group benefit from learning about new medications and treatment options, as well as practical ways for coping with daily issues of living with a skin disorder. Casual conversations among the members has helped to decrease feelings of aloneness and opened opportunities for members to talk to other patients with psoriasis and share information about the disease.
In the future, the support group plans to continue quarterly meetings to increase education among patients who suffer from this disease. Planned topics include new biologics, current research studies, and how to manage stress. Another 5K is being planned and will be held during Psoriasis Awareness Month. We will continue to work with the NPF to create awareness, educate, and bring hope to the psoriasis community.
Ms Medlin is an associate professor at Union University School of Nursing in Jackson, TN.
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.”
Making Connections
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.)
Article continues on page 2
Challenges to Consider
Some challenges the group had the first year included finding a suitable meeting place with easy access, and finding the right balance of meeting frequency. The group did not grow as rapidly as I initially expected and after a time, interest seemed to dwindle. Even the most dedicated members of the group had difficulty attending monthly meetings and asked if we could have meetings less often.
In response to these challenges, the core members of the group got together to discuss possibilities. We decided for our second year, we would host quarterly meetings and ask local dermatologists and rheumatologists to participate by hosting a meeting at their offices. We asked the hosting physician to speak about a topic of interest to psoriatic patients. Three physicians’ offices in the area agreed to participate in this plan.
Meetings were planned in advance and were advertised through flyers, radio, TV interviews, public service announcements, and social media. Topics included new treatments not requiring a shot and what is psoriatic arthritis. Currently, there is renewed interest in the meetings and the group has gained new members.
A Multitude of Benefits
Despite the challenges encountered, several group and individual benefits were noted over the past year from the support group. Bringing people with a common disorder together to compare notes and share stories has proven effective in increasing the morale of individual patients and creating community awareness. In addition, individuals within the group benefit from learning about new medications and treatment options, as well as practical ways for coping with daily issues of living with a skin disorder. Casual conversations among the members has helped to decrease feelings of aloneness and opened opportunities for members to talk to other patients with psoriasis and share information about the disease.
In the future, the support group plans to continue quarterly meetings to increase education among patients who suffer from this disease. Planned topics include new biologics, current research studies, and how to manage stress. Another 5K is being planned and will be held during Psoriasis Awareness Month. We will continue to work with the NPF to create awareness, educate, and bring hope to the psoriasis community.
Ms Medlin is an associate professor at Union University School of Nursing in Jackson, TN.
