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
Tag: patient
“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
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
The Patient Voice: Garth shares his cancer story for 24 Days of Giving
After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school. “In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have… Continue reading The Patient Voice: Garth shares his cancer story for 24 Days of Giving
“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer
Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below. The journey… Continue reading “In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer
“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS
We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about… Continue reading “I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS
“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND
Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called… Continue reading “Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND