April 2016

Patients as Partners: Member Jeff on teaming up with your doctors

This year, the Team of Advisors has been thinking about partnerships in healthcare. They introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — medical students, clinical trial coordinators, and “normals.” Now, they’re each sharing personal stories about these principles in […]

Patients as Partners: Member Jeff on teaming up with your doctors Read More »

“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month

In honor of Sjögren’s Awareness Month, we connected with PatientsLikeMe member Dana, a New Jersey-based poet and screenplay writer who was recently diagnosed. This isn’t the first time we’ve interviewed Dana — she was a member of our 2014 Team of Advisors! Here, Dana talks about the daily challenges of living with Sjögren’s, an autoimmune

“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month Read More »

“I am working on all of it slowly” — Member David opens up about his experience with PTS

Meet member David (david61060), a United States Air Force veteran who’s living with multiple conditions including PTS, sleep apnea, and epilepsy. When we caught up with him, David shared what it was like to grow up as a “navy brat,” his experience in the military, and how It took him more than nine years to

“I am working on all of it slowly” — Member David opens up about his experience with PTS Read More »

“Seesawing Libidos”: A podcast for Parkinson’s Awareness Month

April is Parkinson’s Awareness Month, and this year we’re getting personal. “Seesawing libidos,” an episode of WBUR Boston’s Modern Love podcast, explores an unexpected side effect of a Parkinson’s medication: an overactive sex drive. The story comes from comedian Marc Jaffe, whose wife Karen was diagnosed with Parkinson’s 15 years into their marriage. Before Karen’s

“Seesawing Libidos”: A podcast for Parkinson’s Awareness Month Read More »

“Technology is the cure”: An update with member Steve Saling (SmoothS)

Recently, we paid a follow-up visit to ALS member Steve Saling (Smooth S) to see what he’s been up to and talk about future plans. When we last spoke with him in 2012, Steve was using his expertise as an architect and his interest in technology to spearhead the ALS Residence Initiative (ALSRI), starting with the Steve

“Technology is the cure”: An update with member Steve Saling (SmoothS) Read More »

“These lungs are a precious gift” — Member John shares his new “new normal” for National Donate Life Month

April is National Donate Life Month, an annual awareness effort to encourage Americans to register as organ, eye and tissue donors — and to celebrate those who have donated and saved lives. We recently caught up with IPF member John (John_R), who we interviewed back in 2014. At that time, John described what his “new

“These lungs are a precious gift” — Member John shares his new “new normal” for National Donate Life Month Read More »

Scroll to Top