Recently I was interviewed by the patient-support website PatientsLikeMe.com about “Life on the List”. You can check out the full interview here.
I love PLM because it provides a single, comprehensive location where I can track everything from my meds to treatments, hospitalizations, and even how I’m feeling today. The charts feature offers a running history that I can review as needed with my medical team. Plus, the forums allow me to connect with other patients to ask questions, share ideas and encouragement, and offer feedback on a wide variety of pf-related issues.
A key component of PLM is data sharing between researchers and members. Researchers frequently send out requests to members to take part in questionnaires, interviews or surveys. And, I can give them access to my charted info for further research and analysis.
If you haven’t visited PatientsLikeMe.com, it’s well work a click. They have communities for a wide variety of diseases, illnesses and conditions — even “rarities” like pulmonary fibrosis.
Recently, I was interviewed by PatientsLikeMe.com, a wonderful resource site for people dealing with a wide range of health issues. Membership is free and the site is loaded with valuable information indexed by disease, research news, charts to track your personal progress, as well as a warm and supportive community. Check it out and let me know what you think.
Reblogged from The Value of Openness: The PatientsLikeMe blog
As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who starting blogging about her journey back in October 2011. Her blog is called Reality Gasps and she balances stories of her daily struggles with dashes of humor that can make anyone smile. If Lori sounds familiar to some of you, it’s because she’s also part of the PatientsLikeMe community. She recently took some time to talk with us about why she started blogging, the difficulty in finding a diagnosis and how connecting with others has positively impacted her life.
Read the whole interview at Patients Like Me blog.