If you’ve been following the blog, you’ve already met three members of the PatientsLikeMe Team of Advisors – Dana who is living with bipolar II, Lisa who is living with Parkinson’s and Becky who is living with epilepsy. Now, we’d like to introduce Emilie, a social worker and therapist who is living with Sjogren’s Syndrome and… Continue reading Getting to know our Team of Advisors – Emilie
Category: Patient Experiences
“The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS
PatientsLikeMe member mmsan66 was diagnosed with ALS back in 2008, but she’s been fortunate to experience an unusually slow progression, which currently affects only her legs. As a college professor, financial planner and ALS advocate, she raises awareness through her work with the Massachusetts Chapter of the ALS Association. She even finds time to visit… Continue reading “The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS
“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer
PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life… Continue reading “Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer
PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange
Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by… Continue reading PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange
What do you know about cervical cancer?
January is Cervical Health Awareness Month, but it’s not just a month to learn more about cervical cancer, it’s about learning how to prevent it. Since the 1950s, there’s been in increased effort to raise awareness for prevention screening, and from 1955 to 1992, the cervical cancer incidence and death rates declined by 60 percent.1… Continue reading What do you know about cervical cancer?
PatientsLikeMe members to be highlighted in patient empowerment webinar
Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar. On Tuesday, January 20th, at 2:00pm EST, the Partnership to… Continue reading PatientsLikeMe members to be highlighted in patient empowerment webinar
The Patient Voice- MS member Jackie shares her story
When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was… Continue reading The Patient Voice- MS member Jackie shares her story
“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP
Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but… Continue reading “I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP
Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni
Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA). The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then,… Continue reading Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni
2014 recap – part II
2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do. At PatientsLikeMe Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in… Continue reading 2014 recap – part II