“Lana,” a woman I interviewed who asked that her real name not be used, lives with mitochondrial disease and is an active member of a private Facebook group of people who share her diagnosis. Some of the members have become experts in drug interactions particular to “mito” and offer guidance to others based on their […]
Public Q&A: How to connect teens with health peers
In the spirit of Public Q&A, I am sharing a question I received from someone who helps run outreach and support programs for a disease-focused nonprofit: “In your research did you learn about what mode and types of connecting teens preferred? Did any teens express wishes for something online that they couldn’t find in terms of connecting with peers?” Essentially, […]
Public Q&A: Empowering people in their relationships with clinicians
In the spirit of public Q&A, I’m sharing an intriguing question I received recently from a community colleague. Check out my answer and then add your ideas and suggestions in the comments below. Do you know of any particularly good or interesting services to empower patients in their relationships with doctors, especially ones which involve […]
Peer support for when the system fails
What do you do when you know something is wrong but you can’t find anyone to confirm your suspicions? Or when you finally identify the culprit but find out that other people are being kept in the dark? These days it’s likely that you go online and if you are lucky — or determined — […]
What I’m reading, listening to, admiring…
I hunkered down at the library this week, working on a couple of long-term projects. I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week: Radiolab: Worth — what would you pay for another month of life? How about a year? […]
Public Q&A: Alternatives to Facebook and YouTube?
Kathleen Bogart, PhD, studies how people communicate across disability. I met her through the work I’ve done with the Moebius Syndrome Foundation (and I wrote about her research in 2012: Facial Paralysis, Not Personality Paralysis). She emailed me with a very intriguing question, so I’m sharing it here for discussion: Moebius Syndrome is a highly […]
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