Social Media Health Network

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Cindy Chmielewski (@MyelomaTeacher) posted · Recent activity · Mon, Jul 21 10:05pm · View  

Cindy Chmielewski - Patient/Caregiver Scholarship 2014

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.

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donna (@donna72159) responded:

Cindy and I started 1st grade together many, many years ago. I can not think of a nicer, more hard working person than Cindy. She is an inspiration to many and those of us who knew her "way back when" knew she would go on do great things in life. She is a remarkable person and someone I am honored to consider a life long friend. She is truly deserving of this scholarship.

Posted 11 hour(s) ago · View

Diane G (@ddhglover) responded:

Cindy you are an inspiration to so many. Your courage, strength and determination is evident in all that you do. Thanks for making this world a better place for all by continuing to be a wonderful example of positiveness. Keep the footprints going! Thanks for all that you do.

Posted 6 hour(s) ago · View
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Danielle Thompson (@daniellethompson) posted · Recent activity · Mon, Jul 21 9:51am · View  

In case you missed it - Twitter just announced a tool for organic tweet analytics. Just thought I'd share. Happy Friday!

Lee Aase (@leeaase) responded:

Thanks, Danielle - this is a great find! I'm copying Makala from our team, who does a lot with our analytics, to take a deeper look at it. @Makala Johnson

Posted Sat, Jul 12 at 7:52pm CDT · View Danielle Thompson likes this

Makala Johnson (@makalajohnson) responded:

Thanks for sharing, Danielle, and for cc'ing me, Lee! I took a look at the article posted above, as well as Mayo's organic tweet activity numbers. We get quite a few of these numbers via a third-party social media management system that we use for other purposes, but I like the clean visual layout of the data from Twitter. I think this is a great feature, especially for those who don't currently pull their Twitter [...]

Posted 18 hour(s) ago · View Danielle Thompson likes this
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Christine H. (@bchoekenga) posted · Recent activity · Mon, Jul 21 9:48am · View  

Hi. I'm looking for feedback on how other large organizations handle individual physician or researcher websites. I work at an academic health sciences center that includes several health science colleges (medicine, nursing, etc.) as well as two hospitals and a group of community-based physicians. In addition to the individual profiles and departmental/service line pages that faculty and clinicians have on our official institutional websites, many create individual sites for their practices or labs. Does anyone have policies (or even unwritten rules of thumb) about such sites. Do you encourage them? Discourage them? Put parameters on them (such as rules about using the institution's logo)? Offer support to develop them? Any input is appreciated, but especially from others in an academic health center context. Thanks!

Jason Slusarchuk (@jasonslusarchuk) responded:

Hi Christine. I can't speak on behalf of an academic medical center, however I do work in social media, primarily with healthcare providers, and I am seeing a rise in use of social across healthcare disciplines/groups. As it happens, I'm currently working with a large multi-hospital/academic medical system that is looking at strategies for rolling out social across their many physician practices. They, like most health systems I think, want their organization to be more [...]

Posted 18 hour(s) ago · View
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Sarah Bramblette (@born2lbfat) posted · Recent activity · Sun, Jul 20 11:28am · View  

Sarah Bramblette - Patient/Caregiver Scholarship 2014

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 [...]

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Ldybg62 (@ldybg62) responded:

I first found Sarah as a fellow gastric bypass patient. She had her bypass for a little while and I was brand new. What a wealth of information she was but more importantly she loved sharing her knowledge to help others like myself. Sarah had some unique perspective on weight loss because she also battled lipedema and lymphedema. I had never heard of either condition until I met Sarah and she was a real inspiration [...]

Posted 2 day(s) ago · View

ccbbgc (@ccbbgc) responded:

You are in inspiration... pleasure to have met you

Posted 1 day(s) ago · View zmz likes this
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