– Zoe Brain, in a comment on the New York Times magazine story, The Hazards of Growing Up Painlessly, which garnered an extraordinary display of public ignorance and fellowship around rare conditions. My hope is that the reporter and editors read every comment and learned from the community peer review of the article.
e-patient stories
The internet’s downsides: tell us your stories
This is a request for help finding people who have had bad experiences with online health resources. Let me first say that the internet is often a positive force in people’s lives. My own organization’s research can paint a rather rosy picture: teens are mostly kind to each other online, technology users have more friends […]
Data Mote in the Garden
“Sometimes there isn’t an obvious silver lining to cling to, so you have to try and create your own.”
– Kristen Cerabona, mother of a girl living with CLOVES Syndrome, writing about what it’s like to be a “marathon parent.”
Visualize This: An e-Patient’s Medical Life History
The following was originally Katie McCurdy’s response to the excellent, ongoing discussion about the future for self-tracking. It’s too good not to elevate to a post of its own — Susannah. ____________________________________________________________________________ Katie’s self-crafted medical timeline (Click to enlarge; see story below) There is some recent thought that self-tracking or data gathering is “a manifestation of […]
Mama birds: Catherine Fairchild and Laurie Strongin
On February 29, 2012, Rare Disease Day, I hosted a conversation with Catherine Fairchild and Laurie Strongin, two people who have inspired me in my research about the social impact of the internet on health. They have also inspired me personally, finding joy and reasons to laugh when I think I’d just sit down and […]
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