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Skin pale and tubes running through his throat, Daniel Durrant lay in a hospital bed recovering from a surgery that removed a diseased part of his small intestine. In November 2008, the 28-year-old University journalism student was diagnosed with Crohn’s disease, a genetic condition that eats away at the digestive system.
Durrant, however, didn’t take his disease lying down. From his hospital bed, he created a social network to connect his friends, family and other Crohn’s patients.
Durrant isn’t alone. Evidenced by several Facebook groups, many people diagnosed with diseases are taking their causes to the Internet, sharing information and personal experiences through social networking sites. From cancer to vascular dementia, the Web is providing new ways for people to rally for research and awareness.
The night he went to the hospital, Durrant was brainstorming new ways DuckU, a campus television production, could use social media when he started to feel a familiar cramping in his lower abdomen. He had been on an aggressive medication plan after previous flare-ups, but this pain was the worst yet. Durrant drove to the hospital where doctors told him he would need surgery.
Durrant was angry and struggled to accept his disease. “I was always pretty concerned with my health in general,” he said. “I think I felt a sense of injustice of what I was going through. By somehow recording it, I could escape.”
Using Ning, a Web service that allows users to create their own social networks, Durrant created “Crohn’s End.” Its purpose, he said in a blog post, is to provide a healing place for people living with the disease. The Web site is littered with links and comments from Durrant’s friends and family, as well as other Crohn’s patients.
“What I quickly realized was this was a great way for all of my family to show their support and for me to tell my story,” he said. “It was taking control of my story so everything wouldn’t flow through these gossip channels. That was the most empowering aspect of it.”
By making his story public, Durrant hopes he will inspire others to tell their stories and not feel alone in their treatment. A comment on a post about Durrant’s hospital stay explains how, after being diagnosed with Crohn’s, a user searched Twitter to find Durrant’s site. “I do not know you, never have talked to you, and yet a connection was made because you choose to do this in public,” the user wrote. “It felt real great to have a partner in this … I did not feel alone nor was I scared.”