Conditions Archives

Patients as Partners: Gus and Maria talk partnering with your caregiver

The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how… Continue reading Patients as Partners: Gus and Maria talk partnering with your caregiver

Patients as partners: Member Peggy on the diagnosis journey (Part 2)

Earlier this week, member Peggy (peggyznd) illustrated the 2015-2016 Team of Advisors’ Partnership Principles by sharing how to advocate for yourself and work with your doctor in your diagnosis journey. Here, she talks about finding a specialist, questioning your diagnosis and switching doctors. Peggy reminds all patients play an active role in their health: “Be like the… Continue reading Patients as partners: Member Peggy on the diagnosis journey (Part 2)

Patients as Partners: Member Peggy on the diagnosis journey (Part I)

Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy (peggyznd) digs deeper into one area where strong relationships are key: getting diagnosed. Peggy draws from her own experience with kidney cancer and breast cancer to… Continue reading Patients as Partners: Member Peggy on the diagnosis journey (Part I)

A new precision medicine program for ALS patients

Last month, we talked about precision medicine and what it could mean for psychiatry. What’s precision medicine again? It’s a relatively new way of preventing and treating illnesses that takes into consideration people’s genetic makeup, environment and lifestyle.1 Today — just in time for ALS Awareness Month — we’re digging deeper into how it can be… Continue reading A new precision medicine program for ALS patients

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

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

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

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

Food for Thought: IBS Awareness Month edition

Did you know that 9% – 23% of the world’s population live with irritable bowel syndrome (IBS)1, including over 5,000 members on PatientsLikeMe? For IBS Awareness Month, we’re digging deeper into how people are coping with this condition that affects so many. We asked IBS members for some insight — which foods help and… Continue reading Food for Thought: IBS Awareness Month edition

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