Chronic Illness Sufferers Find Support in Program

July 17, 2010— -- Gwen Dotson is no stranger to pain. For the last seven years Dotson, from Humboldt, California, has endured Takayasu's arteritis, a rare autoimmune disease.

The disease, which affects the arteries, causes Dotson to experience constant fatigue and generalized aches and pains throughout her body. The cause is unknown, and though there are treatments to help ameliorate symptoms, there is no known cure.

"Because of my illness I had to stop working, which I had done for 25 years," Dotson said. "I began to question the purpose of my life."

Dotson said she felt extremely isolated because her disease was so rare, and felt people didn't and couldn't understand her, causing her to become even more reclusive.

That changed in early 2009, when Dotson answered a newspaper advertisement inviting people with chronic illnesses and their caretakers to attend a free workshop.

After her first visit to the workshop she decided to continue through the free six-week program, called "Our Pathways to Health" -- Pathways, for short -- run by the Community Health Alliance of Humboldt-Del Norte, Inc (CHA).

She liked it so much she went through the workshops a second time.

"It's kind of like reading a good book twice; you pick up different things up the second time," she said.

Dotson said that even though other people she met through the program did not have the same illness, they faced a lot of the same challenges. Talking with them helped her to connect and overcome her isolation. She eventually went on to become a leader of a workshop.

"Pathways helped me to have the satisfaction of helping others, giving my life a new sense of value," she said.

A non-profit community group, the CHA serves Humboldt county, a community of about 130,000 located in rural northern California among towering sequoias. The CHA has run the Pathways program since 2009 with support from the Robert Wood Johnson Foundation (RWJF) in an initiative called Aligning Forces for Quality. RWJF has supported this initiative in 16 other communities nationwide.

Community Programs May Offer Hope to Those With Chronic Illness

Those behind Pathways say the goal of the progam is to improve health at the community level by teaching people with chronic illness how to manage their health. The workshops meet weekly for six weeks in local spaces like a senior centers or churches. Caretakers and those with chronic illnesses receive guidance on dealing with symptoms on a day-to-day basis, communicating with your doctor, evaluating treatments, nutrition and physical activity.

The fact that Pathway workshops are led by other community members with chronic diseases is a very important component of the program.

"I don't feel like I'm being taught or reprimanded," said Nancy Ortiz, a workshop leader and former participant. It's more like gentle nudging or kind suggestions by my peers."

Ortiz, a type-2 diabetic who was seriously overweight, lost 150 pounds though lifestyle changes that she learned and support that she received through Pathways. Before, she had avoided going to the doctor for 50 years, except during her pregnancy.

Through the workshops, however, she has learned to communicate with her doctors more effectively. "I'm more informed now... and my doctor has noticed the difference, too." Ortiz said. "These are really good life skills, whether or not you have a chronic condition."

According to Laura McEwen, CHA Executive Director, Pathways has graduated about 300 community participants from 30 workshops. Local doctors now are referring patients to the program, and the hope is to continue to reach even more people. Research from Stanford University on other communities that have implemented this self-management model showed improved quality of life, improved confidence in managing conditions, and fewer visits to the emergency room and doctor.

One challenge that remains, however, is sustainability of the program. It is unclear what will happen after the RWJF funding is done, which is scheduled through 2011. According to McEwen, those behind the program are exploring involvement of local employers and other government sources of funding in order to keep it running after the grant runs out.

Program Participants Hope for Its Survival

Such is the hope of Dotson, Ortiz and others who say Pathways restored their health and hope.

"Pathways goes above and beyond just the medical treatment you receive," Ortiz said. "It helps you set achievable goals and deal with the daily ins and outs of having a chronic illness. It fills in the gap between the care you get from your doctor and truly being well."

Dr. Jane Jue is a Robert Wood Johnson Foundation Clinical Scholar at the University of Pennsylvania and is a guest writer for ABCnews.com. She receives partial funding for her fellowship from the RWJF.