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Nov 7, 2014 · Leave a Reply

Patients Share About How Social Media Saved Them

By Hoyt Finnamore @HoytFinnamore

Winners of this year's Patient-Caregiver Scholarship Contest shared stories about how social media contributed to their health in a special panel discussion during this year's Social Media Week. Their message: Social media is about more than collecting likes and shares or broadcasting information. It's about connection, engagement and much more.

The following videos share additional insights from these articulate health activists.

Sarah Bramblette (@Born2lbFat)

Sarah Bramblette is a lipedema and lymphedema patient who combines experience as a patient and health care administrative professional for advocacy. She blogs about her life on born2lbfat.com, and uses social media platforms to raise awareness plus advocate for improved diagnosis, treatment and insurance coverage. She also crusades against weight bias and stigma, specifically in health care and the workplace.

Sarah is the community advocate for ObesityHelp.com, and member of the Obesity Action Coalition, the National Lymphedema Network, and the American Health Lawyers Association. Her story has been shared on ObesityHelp.com and HealthCentral.com, and in Your Weight Matters magazine, Psychology Today, and the Narrative Inquiry in Bioethics on Obesity. She's also working toward a master's degree in health law.

 

Cindy Chmielewski (@myelomateacher)

Cindy Chmielewski is a teacher diagnosed with multiple myeloma in 2008. She began treatment immediately, and when induction therapy stopped working, opted for a stem cell transplant. She retired when the stem cell transplant failed to put her into remission. Now that consolidation therapy has resulted in a remission, she uses her skills as an educator to teach a new group of “students” – myeloma patients.

Cindy serves on the board of the Philadelphia Multiple Myeloma Networking Group, is a trained mentor, and participates in several online communities. She has attended the American Society of Hematology’s and the American Association for Cancer Research’s Annual Meetings as a Patient Advocate. She’s a member of the IMF ACTION TEAM (@IMFadvocacy) and has represented New Jersey at the Leukemia and Lymphoma Society’s Mission Day in Washington, D.C. She also serves on the Advisory Board of the Patient Empowerment Network and was instrumental in starting the #MMSM monthly Twitter-based chats.

 

Danielle Ripley-Burgess (@DanielleisB)

Danielle Ripley-Burgess is a two-time colon cancer survivor who works as the director of communications for Fight Colorectal Cancer. She was diagnosed with colon cancer a few weeks after her 17th birthday in 2001 and again at age 25 in 2009. During more than a decade of survivorship she’s gotten involved in the colorectal cancer community to inspire others. Through her advocacy work, Danielle has traveled coast-to-coast to host events and share stories of those touched by colon cancer.

In addition to working for Fight CRC, she was featured as Miss October in the 2009 Colondar, a calendar of young colon cancer survivors, and serves on the board of directors for The Colon Club. Her story has been told around the world through syndicated online and print newspaper articles, blogs and on TV and radio shows, including The Today Show, BBC’s ‘World Have Your Say’, and Sirius Radio’s Doctor Radio, and she is a contributor to the Huffington Post blog.

Tags: empowering patients, ePatient

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