As an author and public speaker about the patients perspective I am confident that I have much to contribute and also much to learn at Social Media Week at Mayo Clinic. I am excited by the opportunity to share with others my experience as a coma patient who awoke to the reality of living in a world with Locked-in Syndrome where I could neither speak nor move. It took me nearly two weeks before I could signal "yes" and "no" by blinking my eyes, and six weeks before I could utter a sound and move my arm. With medical advancements more and more patients find themselves Locked-in. To my knowledge there is no support community for Locked-in Syndrome at Mayo and I would like to [...]
Life is not about the steps you’ve taken, or the places you’ve been, it’s about the footprints you leave behind. My name is Cindy AKA @Cindy Chmielewski and I hope the digital footprints I leave behind help a future generation of myeloma warriors become empowered patients. July 14, 2014 was my 6 year Cancerversary.
I have grown tremendously as a person over these six years. Six years ago I was an uneducated/uninvolved patient who blindly followed doctor’s orders. I didn’t ask questions, research my conditions or seek second opinions. Today I am an empowered patient and an active participant in my healthcare. I attribute social media as being a major impetus for my metamorphosis. I learned through listservs, blogs, Facebook, forums, teleconferences and Twitter.
My name is Sarah Bramblette, I am 36-years-old and have primary Lipedema and secondary bilateral lower extremity Lymphedema. I was diagnosed with Lymphedema in 2001, and Lipedema in 2004. Lipedema was first recognized by doctors at the Mayo Clinic in 1940 and is a medical condition that causes the abnormal accumulation of adipose tissue in my hips, legs, and arms. I have an advanced stage of Lipedema which includes the onset of secondary Lymphedema.
My initial diagnosis was delayed by two years because doctors blamed my weight for the size of my legs. Often patients with my conditions go undiagnosed due to lack of awareness among medical professionals who mistake Lipedema for obesity. Many times patients self-diagnose themselves from information they find on the [...]
Need input from hospitals using #hcsm to build practice communities focused on #patientsafety
I am exploring the use of social media as a platform for knowledge exchange and learning following patient safety incidents in UK hospitals - if anyone has some experience of this please get in contact