In Documentary, Stories of Lupus, Six People Talk About Their Experiences

Documentary video on living with a chronic disease

This grant helped fund final editing, distribution, and outreach for Stories of Lupus, a 27-minute film examining the experiences of six people with lupus and their families.

Lupus is a potentially life-threatening autoimmune disease that may involve the skin, joints, blood, and other parts of the body. Producers Marcia Urbin Raymond and Karin Mellberg, who themselves have lupus, shot the film with a professional production team on a 3,200-mile journey to eight cities during National Lupus Awareness Month in October 1997.

According to the producers, the documentary's primary objective is to open communication and stimulate discussion about chronic illness and the need for better systems of care for lupus. The disease afflicts some 2 million people (primarily women) in the United States.

Inspiration for the project came from the work of the late Charles Kuralt, who traveled and reported throughout the country for his On the Road feature for CBS television. (Kuralt died of complications of lupus in 1997.) Kuralt's CBS colleague Charles Osgood narrated the film.

Key Results

  • Stories of Lupus aired 390 times on more than 200 Public Broadcasting Service (PBS) television stations around the country in 1999. In addition, 5,000 videos were duplicated and distributed to the 150 Arthritis Foundation chapters and the 100 Lupus Foundation of America chapters, as well as women's organizations, hospitals, and libraries across the nation. Collateral materials were developed and distributed with the film with the assistance of the Arthritis Foundation and the Lupus Foundation.

  • The film won a Freddie Award in the 1999 International Health & Medical Media Awards sponsored by Time Inc. Health. A companion website received more than 200,000 visits over the duration of the project (the site no longer operates). The site won an Editors' Choice Award fromHealingWell.com and was featured on other websites, including WebMD and Yahoo. Articles on the film appeared in nine publications, and the producers were interviewed on five television shows in major cities.