This post originally appeared on Diabetes Mine.
Forty-five makers, thinkers, designers and doers gathered in Cincinnati for a two-day meeting to kick off “Phase Zero” of a new initiative to imagine a new system of care for people living with Type 1 diabetes (T1D). The best way I can describe the group is that everyone was “game,” meaning up for anything, silly or serious.
I will leave the official accounts of the event to the hosts, the C3N Project and T1D Exchange. But I can share a few vignettes. Continue reading
Here’s a question I received recently: What kinds of indicators tell you if you are going in the right — or wrong — direction in your work?
I decided to answer it here, as a public Q&A, because it merits crowd-sourcing. Continue reading
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 visible, but “unrecognizable” condition. That is, strangers immediately notice that our faces and speech are different, but they don’t know the reason for the difference. They don’t understand the cause, nature, or accommodations needed for it. This makes Moebius more challenging socially than disabilities that are visible but better recognized (i.e. using a wheelchair). Continue reading
On this Giving Tuesday, consider donating money to support Regina Holliday’s latest project: The Walking Gallery Center for Arts and Healing.
Inspired by a call for essays about e-patient travel stories:
There is an unspoken code at airport gates. Don’t touch me. Don’t touch my stuff. Don’t step in front of me unless you have a heck of a good reason, especially if I got here before you did. Continue reading
The Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way.
Facebook should support those communities, listen to their users, and create a safe space for health on their site.
Two examples of Facebook’s direct effect on people’s well-being:
Erin Moore is the mother of four children, one of whom is living with cystic fibrosis (CF). She is a member of a Facebook group called CF Mamas, a thousand parents who talk online about everything from recipes to research updates. Continue reading
All signs point to a social revolution in health. As I’ve put it, the internet gives us access not only to information, but also to each other. Crucial advice can come from a just-in-time someone-like-you as well as from a clinician.
So what happens to people who are shy or introverted? If sharing and learning from others is a key to health, how might we support those who do not easily participate in social settings, on or offline?
A friend wrote to me this week and gave me permission to share his question here:
While putting a ton of energy into helping guide my dad’s care — he’s not doing terribly, but aging incredibly quickly — I’ve learned I’m unable to be there for my mom as much as I’d like. I’m probably the one person in the world she can most talk to, but I don’t have the strength to also help her with the process of letting go of the idea that we can’t fix him.
She is yet another caregiver who doesn’t have the support she needs.
She’s also very private. She has very few friends she’s really open with and would never consider being in an online community.
What to do? Continue reading
I live (mostly) by Michael Pollan’s advice to “eat all the junk food you want as long as you cook it yourself.” But Halloween is an exception. We live in a Sesame Street-like townhouse neighborhood in Washington, DC, so my kids can easily hit 100 houses while trick-or-treating. The candy haul is epic.
My food-allergic son has always been great about sorting out the candy he can’t eat, but the night can still be stressful, knowing that peanut butter and almond confections are in his bag.
So we, along with many other food-allergy families, embraced a new idea this year: the Teal Pumpkin Project. Started by a food-allergy mom in Tennessee, the idea is that you paint a pumpkin teal (the theme color of FARE, the largest U.S. food-allergy advocacy group) and place it on your porch to let people know that non-food treats are offered at your house. Continue reading
I’m experimenting with a new publishing platform: Medium. I’ll eventually post the entire essay here, but for now I’d love it if you would check out this story — and recommend it to others if you like it!
Last week I was part of the first community meeting for Data for Health, a program sponsored by the Robert Wood Johnson Foundation. It was held in Philadelphia on October 30 (an absolutely beautiful fall day).
You can catch up on the #data4health tweets thanks to Symplur — and there were some good ones: