After nearly 15 years tracking the cultural shifts happening at the intersection of health and the internet, I know a few things. #1 – don’t get between a parent and a piece of information he or she needs to make a decision about the health of a child. #2 – from 28.8 modems to the latest smartphones, […]
Rare Disease
A field guide to The Diagnosis Difference
The Pew Research Center released a report today on people living with chronic conditions: The Diagnosis Difference. Policy makers, patient advocates, entrepreneurs, investors, clinicians — all health care stakeholders — can use the data to map the current landscape. There are still barren patches, where people remain offline and cut off from the resources and […]
“Every Mom and Dad of a child with a rare disease has earned an honorary PhD”
That’s a line from an essay entitled “cri de cure” by Ethan Perlstein. I tweeted it and got some great replies: Hahaha. I’m often asked by medical teams if I am a MD or nurse. I tell them ‘no,but I have a PhD when it comes to my daughter’ – @SolidFooting Yes! I know more […]
Rare Disease Day 2013
People living with rare conditions inspire my work every day. A few resources to check out: Follow @RareDiseaseDay on Twitter or subscribe to my Rare Disease list Read Wendy White’s post on e-patients.net: Rare Disease Day 2013: Help Spread Awareness Read the Pew Research Center’s report featuring insights from people living with rare conditions: Peer-to-peer […]
The boy with a thorn in his joints (and the mom who turned over every rock)
When I was writing the Pew Research report, “Peer-to-peer Healthcare,” I switched back and forth between numbers and stories, national survey data and notes from my fieldwork among people living with rare conditions. I learned to scan my spreadsheet of rare-disease respondents for women’s names since they seemed to stop at nothing to protect their […]
Look for the helpers
You may have seen the image before, associated with this quote: “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of ‘disaster,’ I remember my mother’s […]
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