Moving Pictures: Marcia Urbin Raymond, left, and Karin Mellberg earned a 1999 Freddie Award for the documentary they co-produced, 'Stories of Lupus.'




Shedding light on lupus

How two friends filmed a documentary about a misunderstood and incurable disease

By Shari Kaplan

Traversing 3,200 miles in an RV, soaking up the scenery, meeting fascinating people and capturing it all on film may sound like the ultimate road trip.

But things aren't always as they seem.

For former Saratogan Karin Mellberg and San Franciscan Marcia Urbin Raymond, the experience was more of a mission. Their goal was to shed light on something else that isn't always as it seems: systemic lupus erythematosus, the topic of their half-hour documentary, Stories of Lupus.

Lupus is an autoimmune disease in which the body's immune system attacks its own tissues, causing rashes, hair loss, joint pain and inflammation, fatigue and, in some cases, organ damage. There is no one cause--rather a variety of triggers--and no known cure. Although lupus typically strikes women in childbearing age, children, men and older adults can also be affected.

Mellberg, a 1983 Saratoga High School graduate who now lives in Palo Alto, was diagnosed with lupus in the fall of 1996. Raymond, with whom she became friends through a family connection, was diagnosed at the beginning of the same year. Impelled by journalist Charles Kuralt's 1997 death from lupus complications, the two college graduates realized that not only was there a lack of public knowledge about this disease, but there also had never been a documentary on national TV about it.

Stories of Lupus, which debuted on the PBS network in October, helped remedy both situations. The film also won the 1999 Freddie Award at the International Health and Medical Film Competition run by Time Inc. Health.

"Any time you're diagnosed with a disease like this, there's a lot of fear and misunderstanding. There's often a sense of isolation because the [lupus] community isn't always apparent," Mellberg says.

Being informed is crucial to recovering from flare-ups and keeping lupus at bay, she says, citing dietary changes, exercise and stress management as key factors in maintaining wellness and decreasing the need for medications.

After fundraisers, donations, obtaining corporate sponsors and networking in the film community, Mellberg and Raymond found themselves with an RV, a minivan, video cameras and a film crew. Calls to different chapters of the Lupus Foundation and rheumatologists in various cities provided a full slate of people to profile in California, Nevada and Arizona. Months of editing followed.

"Our hope for this documentary is that it will be a catalyst for conversation--discussions that would go beyond lupus and address the daily issues and choices people living with a chronic illness must face," Raymond explains. "Through dialogue, we can begin to better understand the impact a chronic illness has on a mother, a colleague, a neighbor or a child."

The women never lacked for interviewees.

"Very few people with lupus are asked what exactly is going on. They were very generous and open with their answers," Mellberg says, smiling with gratitude and empathy. "There was energy and healing that came every time we met with somebody."

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For information, visit www.storiesoflupus.com, or call Karin Mellberg's company, Mosaic Productions, at 650.462.9293.

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