We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below,… Continue reading Patients as Partners: John and David share their clinical trial experiences
Patients as Partners: An open letter from Craig to the “normals”
We’ve been hearing from members about their health journeys. For Craig, who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients. Below, Craig… Continue reading Patients as Partners: An open letter from Craig to the “normals”
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 shared 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 parent who must protect and nurture the child,… 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 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 answer… Continue reading Patients as Partners: Member Peggy on the diagnosis journey (Part I)
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
“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… Continue reading “These lungs are a precious gift” — Member John shares his new “new normal” for National Donate Life Month
Study results: What patients like you said about sleep medications
Over a year ago, we partnered up with Merck Pharmaceuticals to learn more about insomnia and sleep medications. More than 1,200 PatientsLikeMe members responded to questions about how long they’ve had sleep problems, what treatments they’re using, what interferes with sleep most and what their overall quality of sleep is like. Here’s what we uncovered… Continue reading Study results: What patients like you said about sleep medications