March 11th, 2011 by DavedeBronkart in Research, True Stories
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[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.
It’s a good combination: Pat speaks from the heart about her own experience and her passion for community, and Susannah, as usual, speaks as an “internet geologist” — as she once put it, “A geologist doesn’t have opinions about the rocks, she just observes and describes them.” Susannah spoke about her newly-released report “Peer-To-Peer Healthcare,” about which she recently wrote here.
Listener comments begin around 13:00. Examples:
— A woman describes how she started a Facebook group for her painful chronic condition (ankylosing spondylitis) and it’s grown into a website, HurtingButHelpful.org. (Spoonies, take note!) What drove her to create a patient community? “There’s no one else who can understand what I’m talking about.”
— The mother of a newborn with a heart defect found similar parents online. Hearing their stories — and even seeing an upsetting photo — helped her prepare for the surgery.
— On the downside, the daughter of an ovarian cancer patient said her now-cured mom keeps going online to patient communities and getting scared by what she reads. (Host Neal Conan’s observation: “There other parts of the computer that can be addictive, and I guess this one can, too.”)
It’s heartening to hear coverage of online patient communities, including the risks and challenges, in a respected outlet like NPR. (Time covered it, too, a year ago.) And there’s no equal for the reality check of Pew’s data. Some patient activists suggest (and some people fear) that the Internet “frees” patients from doctors, but Pew says that’s not what people are doing. Read more »
*This blog post was originally published at e-Patients.net*
August 13th, 2010 by AndrewSchorr in Better Health Network, True Stories
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I had not been to Indiana for 42 years. But last week I found myself on a commuter train in Michigan City, Indiana, taking my family on the South Shore Line to Chicago for the day. We were vacationing not far away on the shores of Lake Michigan.
The train was crowded so my group of six spread out where there were vacant seats. I found myself sitting with two men, father and grown son, on the way to a day at Wrigley Field and a Chicago Cubs baseball game. Before long the chit-chat turned to my work, and my explanation of Patient Power sparked the telling of an incredible medical story from the older of the two men, a story of good luck and great medical care that has given him a second life. Read more »
*This blog post was originally published at Andrew's Blog*
July 10th, 2010 by RamonaBatesMD in Better Health Network, Health Tips, Patient Interviews, True Stories
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The New York Times has a series called “Patient Voices” which gives insights from the patients with the disease, physical and emotional changes in their lives, and accommodations made. The most recent series is on patients with alopecia (hair loss).
“The Voices of Alopecia” by Tara Parker-Pope (July 6, 2010):
This week, Patient Voices explores alopecia, an autoimmune disease that leads to a few bald patches to the loss of every hair on a person’s body.
To hear what it’s like to live with alopecia, listen to the Patient Voices audio slideshow that features adults, children and their parents who are coping with the condition.
Listen to these seven people tell what it’s like to live with alopecia:
– Matt Kelly, 43, lost his hair at age 38 over a 6 week time span.
– Jennifer DeFreece, 29, developed alopecia totalis as a child.
– Margaret Staib, 42, an artist with three daughters.
– Rafi Wasselman, 16, says his best medicine is his collection of caps.
– Maureen McGettigan, 47, began losing her hair at age 16.
– Annie Kazmi, 33, tells her daughter Noori’s story. Then Noori tells her own. Read more »
*This blog post was originally published at Suture for a Living*
December 6th, 2009 by KerriSparling in Better Health Network, True Stories
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Over the last few weeks, I have had a few run-ins with the gentlest of diabetes police – people who don’t mean to be second-guessing me or asking me why I’m eating that, but still, they can’t help but ask. Sometimes their questions are subtle and we end up having a quiet, private discussion about what type 1 diabetes means to my life, and I welcome these opportunities as ways to help educate and advocate.
But other times, when I’m at the table with a piece of pie in my hand and about to sink my fork into it, knowing full-well that I am at a very good blood sugar and have bolused for the pie carefully, and someone asks, “Why are you eating that?” … I feel completely defeated. And embarrassed. Can’t a girl have dessert without being questioned? And when questioned, why isn’t my explanation good enough to justify my actions?
I’d like to be a person with diabetes who sits down for dinner and eats with everyone without the scrutiny. Read more »
*This blog post was originally published at Six Until Me.*
[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.
