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)
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
“Each day is different and you do what you can” — Member Rick shares his story for Myeloma Action Month
A few weeks ago, we shared Marcia’s story for Myeloma Action Month. Today, we’re introducing Rick (ricktowner), another member of the multiple myeloma community. Before he was diagnosed in 2012, Rick and his wife led active lives volunteering in private, state and federal parks. Now in remission, he still travels when he can and rides… Continue reading “Each day is different and you do what you can” — Member Rick shares his story for Myeloma Action Month
MS and Pregnancy – From our Partners at MotherToBaby for MS Awareness Month”
It’s MS Awareness Month, and this year, we’re focusing on how the condition affects pregnant women and their babies. Our partners at MotherToBaby recently shared an article that answers some of the questions that might come up for women who have MS and are thinking about having children. Check it out below… MS: The Diagnosis… Continue reading MS and Pregnancy – From our Partners at MotherToBaby for MS Awareness Month”
Oceans of Hope: An interview with PatientsLikeMe member Beth
Beth (sailebeb) has been living with MS since 2010, but it hasn’t stopped her from leading an active lifestyle. In the spring of 2015, she joined a crew of MS patients on a sailing trip from Tahiti to American Samoa. The journey was organized by the Sailing Sclerosis project, Oceans of Hope, to change perceptions that people… Continue reading Oceans of Hope: An interview with PatientsLikeMe member Beth