September is Global PF Awareness month, and a few weeks ago, members of the PatientsLikeMe PF community helped us kick it off by sharing in their own words what it’s like to live with this condition. The month is winding down now, so we caught up with our partners at the Pulmonary Fibrosis Foundation (PFF) to learn… Continue reading Global PF Awareness Month: An interview with Dr. Cosgrove from the Pulmonary Fibrosis Foundation
Overcoming Multiple Sclerosis: Member Casper opens up about his MS journey
We recently got to know Casper (casper80), a member of the MS community who’s been living with his condition for nearly a decade. Along with tracking his health on PatientsLikeMe, Casper follows the “Overcoming Multiple Sclerosis Recovery Program” (OMS), founded by Professor George Jelinek of the University of Melbourne over 15 years ago. The program focuses… Continue reading Overcoming Multiple Sclerosis: Member Casper opens up about his MS journey
Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors
It’s been quite a year for the 2015–2016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships. Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for… Continue reading Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors
“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI
Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new… Continue reading “The most important thing is to know you are not alone” — Member Vicki opens up about her TBI
“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month
September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having… Continue reading “I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month
The community speaks out for Pulmonary Fibrosis Awareness Month
How much do you know about pulmonary fibrosis? Today kicks off Global PF Awareness Month, and to spread more understanding for this condition which affects over 6,600 PatientsLikeMe members, we asked the community to speak up. In a recent forum thread, members chimed in with the one thing they think people should know about what it’s… Continue reading The community speaks out for Pulmonary Fibrosis Awareness Month
Paul Wicks weighs in on a new, patient-conceived project
Partnering with patients is at the very core of what we do, but a new collaboration with longtime ALS member Steve Saling (SmoothS) is giving that a new spin — it was Steve’s idea and he’s been driving the project from day one. Since his diagnosis in 2006, Steve has made it his mission to… Continue reading Paul Wicks weighs in on a new, patient-conceived project
Steve Saling’s patient-conceived ALS project
Steve Saling (SmoothS), a longtime ALS member of PatientsLikeMe, has made it his mission since diagnosis to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., at the Leonard Florence Center for Living, to multiple residences across the… Continue reading Steve Saling’s patient-conceived ALS project
The Magic Pill: A new 21-day podcast challenge
Exercise — do you think of it as a chore, or love the feeling? Our partners over at WBUR are launching a new podcast to inspire people to move more by changing the way we think about it. “A daily dose of get-up-and-go” is the mantra of the The Magic Pill, a 21-day challenge that kicks off… Continue reading The Magic Pill: A new 21-day podcast challenge
Patients as Partners: Christel on “finding your tribe”
Today, we’re sharing the final piece of the Patients as Partners series from Christel, who’s living with type 1 diabetes. Christel has relied on several of the Partnership Principles including respect, communication, and shared responsibility throughout her journey. Below, see what she says about connecting with others who know what she’s going through and discovering… Continue reading Patients as Partners: Christel on “finding your tribe”