Many of us have become close friends who email and call each other. Our group encourages each other by sharing what is working and what isn't, sharing the latest news in the cancer world, sharing stories of success that give hope.
Mill Valley, CA (PRWEB) November 30, 2011
The Facebook page for the Sarcoma Alliance has become a supportive community, with more than 1,500 members, some newly diagnosed and some who have stayed with the national nonprofit organization to help others, Executive Director Arthur Beckert reported this week.
Because sarcoma is a rare cancer, many patients have never talked to someone else with the disease until they find the Sarcoma Alliance online, Beckert says. To connect them, the Alliance has created support groups, a discussion board, chat room, Peer-to-Peer Network, blog and Facebook.
“Facebook has been growing more rapidly, and its use has been broader than we expected,” he says. The page was started in 2008 to provide information, but people quickly used it to support one another.
“After connecting on Facebook, many of us have become close friends who email and call each other,” says Judy Jones Morgan of Clarksville, Tenn. Her husband has Langerhans cell sarcoma. “Our group encourages each other by sharing what is working and what isn't, sharing the latest news in the cancer world, sharing stories of success that give hope, and giving hugs or positive messages to people who are struggling or have lost loved ones. We have cheered with the success stories and cried because another one has lost the battle!”
The Sarcoma Alliance, founded in 1999, has always used computer technology to connect people affected by sarcoma. First came its website. 2000 brought a discussion board, which now has more than 2,000 members, Beckert says, but is far less active these days than the Facebook page.
Toni Messerer of San Diego, who checks the Facebook page occasionally, joined the discussion board in 2005 for information. No one else had dermatofibrosarcoma protuberans, her type of sarcoma. But she connected with Bob Chambliss, who was about the same age and had the same attitude toward life.
“Reading his posts made a huge impact on me. I thought, 'Here is a guy who really gets it.’ This helped to take away some of my anxiety and helped me laugh in the face of fear. We only sent messages to each other a few times before he got sick again, and I doubt he realized how his kind words helped me. I realize that many people share vital medical information on this site but my experience with SA was more of an emotional connection with others who also battle this insidious disease.”
In 2005, the Alliance started its own live chat room, which board member Dave Murphy of San Pedro, Calif., moderates. Conversations begin at 8 p.m. Wednesdays and Sundays at 9 Eastern Time.
Brenda, who didn’t want her last name used, participates on the chat as well as in the Peer-to-Peer Network, which also began in 2005. It now has more than a thousand participants in all 50 states and 12 countries. Brenda was matched with a woman across the country, who also has survived synovial sarcoma.
“She lost her arm above the elbow about the same time that I lost my leg. We talk all the time. We joke! We have never met and mostly we talk on the phone.”
Brenda has been quoted on the Alliance’s blog, which has had almost 20,000 page views since it started in May 2009. It provides news, information and links to other sarcoma blogs, but readers rarely comment.
The Alliance’s history of grassroots support goes back about 14 years when Wendy Sommers, who had osteosarcoma, and Suzanne Leider, who had synovial sarcoma, met in their oncologists’ office in San Francisco. They wanted others to have what they had – support from someone who understood. Sommers’ husband, board member Kevin Plottner, created a website, and Leider hosted a support group in her living room in Mill Valley, Calif. They began to get calls and e-mails from around the world.
“That was way back when we wanted to start support groups everywhere, but it was difficult to get enough people and interest in one place,” says board member Marites Tullius of Los Angeles.
Support groups come and go. But the one the Alliance created in 2001 in the L.A. area keeps chugging along, says Murphy, who attends regularly. Beckert says the Alliance is glad to help others start a group. The latest may be at the Moffitt Cancer Center in Tampa, whose sarcoma department helped create a group for adolescents and young adults.
“While this serves a much-needed purpose, the intention is to create a sarcoma-specific support group to address the concerns of all sarcoma patients,” says Dr. Anthony Conley, a sarcoma medical oncologist.
For tips on supporting cancer patients, either in person or online, click here.