Meet Jenna. She’s been part of the PatientsLikeMe Team since back in 2012 when she first started as an intern. And for Jenna, working at PatientsLikeMe is personal. Her father was diagnosed with ALS when she was just eight years old, and so, being part of PatientsLikeMe is especially meaningful for her. For ALS Awareness… Continue reading “I learned that life is precious.”
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Patients as Partners: An open letter from Craig to the “normals”
We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), 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,… Continue reading Patients as Partners: An open letter from Craig to the “normals”
“TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien
Meet Patrick O’Brien, a.k.a. “TransFatty,” whom we met through our friend and longtime PatientsLikeMe ALS member Steve Saling (Smooth S) after catching up with him earlier this year. Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker. Back… Continue reading “TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien
What’s your experience with accessing your electronic medical records?
Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the… Continue reading What’s your experience with accessing your electronic medical records?
Raising awareness for immunological and neurological health in May
Earlier this year, we interviewed Team of Advisors member Craig, who’s living with fibromyalgia. Craig talked talked about the need to raise awareness for “hidden disabilities” like his condition. So today, we’re doing just that. May 12 is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs), which include fibromyalgia and myalgic encephalomyelitis (ME)/chronic… Continue reading Raising awareness for immunological and neurological health in May
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