Patient-Driven Care

When Sharon Argwings-Kodhek was told in 2007 by a physician in her native Kenya that she had a thyroid problem, her United States–based uncle, also a physician, became suspicious. Her symptoms were fatigue, pain in all of her muscles, weight loss, knee problems, and a tingling sensation in her fingers that progressed to pain.

“You need to come here immediately,” her uncle said.

She left to visit her uncle in Texas three days later. Within a few short days, Argwings-Kodhek could not even get out of bed. Tests revealed that she had lupus, with her kidneys functioning at only 60%.

Argwings-Kodhek received treatment for lupus, including chemotherapy, and decided to go back to Kenya armed with as much information about the disease as possible. She was returning to a country with about 38 million people—but with only one rheumatologist practicing in the five countries that make up East Africa. “People who go to see him wait three, four, or even five hours because they don’t have a choice,” Argwings-Kodhek says.

She asked the rheumatologist if there was something that could be done to help educate more people about lupus and was told that most people who had the disease did not want to talk about it. “People thought that it was like AIDS or cancer,” she explains. She also encountered numerous misconceptions about the disease. In some of her work to expand lupus support, one woman asked Argwings-Kodhek to leave her office, for fear that she would catch lupus.

I realized that there was nothing to help educate people about lupus, Argwings-Kodhek says. This prompted her to write a magazine article about lupus and start a support group that she advertised at major hospitals. Her support group began in May 2009 with 16 members and has since grown to 72 members.

A Resource for Much-needed Support

Sharon Argwings-Kodhek (front row, second from the left) and some of the patients in the support group.

The group gives lupus patients a chance to meet one another and find support for their often misunderstood disease. The members meet once a month at one of the larger hospitals in Nairobi. Some members travel three or four hours to attend. Argwings-Kodhek encourages members to bring a loved one with them so the group can educate even more people about lupus.

In addition to offering chats and support, Argwings-Kodhek is expanding education in the group via invited speakers. Specialists such as cardiologists, ophthalmologists, nurses, and others have addressed the group. A number of physicians who have spoken to the group charge members only 50% of their normal fee for treatment.