One of the beautiful things about the olympics is watching the triumph of the human spirit. I know it doesn’t seem that way when watching the news everyday, but humanity can be inspiring. Watching athletes dedicate so much time and effort to achieving their best got me thinking of the unsung heroes in patient empowerment. The individuals battling disease who approach their health or their loved-ones health with the dedication and spirit of an olympic athlete.
I wanted to share some of the voices in patient empowerment that I think deserve to be on the podium.
- www.ReginaHolliday.Blogspot.com Regina Holliday describes herself as a “DC-based patient rights arts advocate.” When her husband Frederick Allen Holliday II struggled to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities, she was motivated to advocate on behalf of patients through art. After her husband’s death from kidney cancer , she began painting a mural entitled “73 cents.” It depicts the Holliday family’s journey through the medical system. Regina also paints on canvas at medical conferences throughout the US. She paints the concepts discussed and presents them through a patient’s view. She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of artists, medical providers, technicians and advocates who wear patient-centered care paintings on the backs of business suits.
- www.tiffanyandlupus.com Tiffany is a lupus ePatient advocate. Her blog shares her experience on life while living with lupus. She is the founder/community manager of Friends Against Lupus; an informative community of lupus patients, caregivers, and supporters and has been an ambassador for the S.L.E Lupus Foundation where she is Chair of their Awareness Committee. Tiffany is an ePatient champion for health and lupus awareness through the power of social media. She is constantly utilizing innovative skills to connect,educate, and empower lupus patients and their supporters worldwide.
- www.rawarrior.com The bio on Kelly’s site starts with “Kelly is a student of Rheumatoid Arthritis because of the axiom: Know your enemy.” And you get a sense from her writing that she is fierce and empowered in her fight against rheumatoid arthritis. She is obviously a student of RA who gains satisfaction in helping others to understand their options and make educated choices. Kelly’s blog promotes self-education and encourages RA patients to direct their own medical treatment decisions. Even though RA is a poorly understood disease that causes a lifetime of disability, you will be struck by the optimism in her blog.
- www.sixuntilme.com Kerri Morrone Sparling started SixUnilMe in 2005 because she was “tired of Googling diabetes and coming up with little more than a list of complications and frightening stories.” Feeling alone she used the power of sharing stories online to connect with others and share her wisdom. She is a patient blogger active in social media and the twitterverse and a proud member of the diabetes community, but as her blog says, there is more to Kerry than diabetes. If you follow her you quickly learn that she is a great role model for all of us.
- www.epatientdave.com Dave is the first e-patient I came across in health and is one of the pioneers of e-patient involvement in the healthcare industry.According to his website, “Dave deBronkart, widely known as e-Patient Dave, is a cancer patient and blogger who has become a noted activist for healthcare transformation through participatory medicine and personal health data rights. A successful speaker in high tech before his illness, he is today the leading spokesman for patient engagement, attending over 150 conferences and policy meetings internationally in the past two years. He serves as volunteer co-chair of the Society for Participatory Medicine.” Having survived Stage IV kidney cancer, Dave committed himself to patient engagement in the healthcare industry. “This is the first time in my life I’ve felt I have a calling,” says Dave, “something I can’t get away from: it’s what I need to do. I’ve had plenty of fulfilling jobs in a great career, but not a calling. This is it.”
The great thread between all these bloggers is they received a diagnosis (one that probably scared them) and rather than respond negatively they took a positive and constructive approach to their disease that empowered them to help not just themselves, but their families and their broader communities.
I was recently struck by a comment Kerri made on Sixuntilme.com where she acknowledged that as an empowered patient with Type 1 she has great support, but she wished there was more support for the people who supported her such as her family. This thought sums up all of these individuals. They give of themselves so that others can learn and not be alone in their own struggles.
In the spirit of the olympics, these empowered patients deserve gold for their work, for sharing their journeys and for inspiring us to be better patients, caregivers and friends. Thanks to you all.
Who are some of your favorite e-patients? Please share them in the comments.