Social Butterflies: Online Resources Create Connections within the Breast Cancer Community

Whisper

Author Janet Thompson has a Google alert for breast cancer, and as such, a list of new, related blogs is delivered to her inbox daily. These, she says, have become some of her most trusted resources as a writer and as a survivor.

“Every day I receive an alert about blogs that survivors are using to communicate their journey and also to interact with others breast cancer sisters,” says Thompson, who has battled breast cancer twice and penned the book Dear God, They Say It’s Cancer: A Companion Guide for Women on the Breast Cancer Journey.

Indeed, online social networking is now a leader in the fight against cancer, as it has become the primary forum for discussion, information sharing, and support. Today’s major players in the social networking realm – sites like facebook and Twitter – allow groups and individuals to quickly and easily spread a message, as well as gain followers and friends who hail from virtually anywhere around the globe.

What’s more, breast cancer support, awareness, research, and fundraising entities are no exception to this trend. A quick search of ’cause pages’ on facebook returns nearly 3,000 breast cancer awareness pages, sponsored by major nonprofits such as Susan G. Komen for the Cure as well as countless smaller initiatives, such as Against the Tide – an annual fundraising walk, swim, and kayak held in multiple locations across Massachusetts and benefiting the Massachusetts Breast Cancer Coalition.

Networking sites devoted specifically to the breast cancer community have also begun to flourish on their own. This evolution is creating a vast web of support for breast cancer survivors that knows no boundaries, and has the potential to become an even more effective map as new inroads are created.

Gena Cook , a health care executive with more than 15 years of experience within the cancer field, is part of this movement to further improve social media and networking as resources. She serves as President and CEO of the still-developing NavigatingCancer.com, a socially driven site dedicated to empowering cancer survivors by offering them the same freedom of communication as larger networking sites, but within a more controlled, relevant environment.

“I have been researching this topic for the past year,” says Cook. “Patients are connecting in many forums across the Web today. The issue with these connections is that cancer is not one disease but hundreds of diseases. Breast cancer is a great example … connecting patients together who have different stages or subtypes [of the disease] is not particularly helpful, as they can receive misleading information. We are working to solve this by creating a very personalized experience based on the patients disease and stage.”

It’s not just the health care community who are leading this charge toward online social networks that are as accurate as they are supportive of survivors. Both the relative ease of desktop publishing and the increasing acceptance of social networking as a means of communication have also spurred many survivors to become online activists themselves.

Crystal Brown-Tatum , a public relations specialist and author of her own breast cancer memoir titled Saltwater Taffy and Red High Heels, describes herself as a two-year, stage IIIA breast cancer survivor. She says she originally signed up for social networking services like Twitter on the advice of a marketing consultant, however she’s found a new, dynamic portal through which to find new audiences and raise awareness.

“For me, these social networking sites are a cost-effective way to reach the masses globally and immediately,” she says. “I use Twitter to update my followers, mostly survivors, on breast cancer updates, clinical trials, media opportunities, survivor awards, and any breast cancer related speaking engagements I have. It’s a great way for me to reach out to newly diagnosed women who want to follow my recovery. Facebook has also been very instrumental in educating people about the different resources available as well as promoting awareness about early detection.”

Like Brown-Tatum, Thompson says she, too has discovered that the ‘new Web’ has become far more than an author’s promotional tool, and adds that the ability to share personal stories remains an important aspect of online support systems. She says she communicates frequently with other survivors via her own Web site, deargodtheysayitscancer.com, and through the free blog site caringbridge.com .

“During my recurrence last year, I came across CaringBridge, where I could post a journal entry and anyone who wanted to follow my progress could,” says Thompson, adding that her involvement with the support group led her to add another Google alert to her account, this one letting her know when some of her fellow survivors have updated their own journals. The information in each post is important, she says; but more so are the connections being made.

More Social Networking Resources for Breast Cancer Survivors:

YouCanThrive.org – Connecting women with other women, as well as free resources

Pink Link Breast Cancer Support Network

U.S. – Middle East Partnership for Breast Cancer Awareness and Research

Breast Cancer Cause Pages on facebook

Jaclyn Stevenson is a freelance writer and publicist based in Massachusetts. She writes regularly on a number of healthcare related topics, including women and heart disease, breast cancer, new technology, and healthcare legislation; www.Twitter.com/writerjax

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