It’s World MS Day and this year we checked in with the global MS community to see how members around the world are living with MS. Here’s what they had to say: “MS is very rare in India. I’m from North India, known as Kashmir, a very beautiful place and it’s rightly known as… Continue reading Going global for World MS Day
Tag: community
“There were so many people asking the things that I was too afraid to ask”
It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over… Continue reading “There were so many people asking the things that I was too afraid to ask”
Meeting PF patients where they are
Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.… Continue reading Meeting PF patients where they are
#NotAlone Recap: On PatientsLikeMe, no one is alone…
As our #NotAlone campaign wraps up, we hope you’ve been encouraged by the thoughts and personal stories of how other members have felt less alone by learning, connecting and tracking on the site. We recently had a look at all the member posts in the #NotAlone forum and wanted to share some highlights with you!… Continue reading #NotAlone Recap: On PatientsLikeMe, no one is alone…
#NotAlone: On PatientsLikeMe, no one is alone
Our co-founder Jamie Heywood calls it “the big idea my brother inspired.” A community of people learning from each other’s shared health experiences, connecting with people who get what they’re going through, and tracking their journeys to inform new research and help others understand what might work best for them. That is PatientsLikeMe, and that… Continue reading #NotAlone: On PatientsLikeMe, no one is alone
Data donations make wishes come true
Back in December 2014, the PatientsLikeMe community donated 450,000 health data points during the 24 Days of Giving campaign, and a special thanks to everyone who participated and have continued to donate their data for good. Every donation made wishes come true for children with life-threatening medical conditions, and on behalf of the community, PatientsLikeMe made… Continue reading Data donations make wishes come true
Throwback Thursday: Diabetes and stress
Just about two years ago, nearly 600 members of the PatientsLikeMe community completed a survey called the Diabetes Distress Scale (DDS), a 17-item questionnaire which measures the amount and types of problems diabetes can cause in a person’s life. And today, we’re throwing it back to the summary of the results. Here’s what Dr. William Polonsky,… Continue reading Throwback Thursday: Diabetes and stress
Caregivers and companions – PatientsLikeMe members talk about their service animals
Service animals are often a topic of conversation in the PatientsLikeMe community, and many members frequently share their experiences with their furry friends. For example, Ted wrote about his service dog Catti-Brie in his blog interview. Here’s what other members are sharing about their animals: “Just last night when I was having a rough dream… Continue reading Caregivers and companions – PatientsLikeMe members talk about their service animals
Getting ready for psoriasis awareness
Image courtesy of the National Psoriasis Foundation Tomorrow is the official start of Psoriasis Awareness Month. The National Psoriasis Foundation (NPF) wants people with psoriasis to know they are not alone: Over 7.5 million people in the U.S. have been diagnosed with the condition, and more than 4,800 people with psoriasis are sharing what it’s like on PatientsLikeMe.… Continue reading Getting ready for psoriasis awareness
Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana”
If you’ve been following the blog lately, you might already know Dr. David Casarett – he’s a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of “STONED: A Doctor’s Case For Medical Marijuana.” He recently worked with PatientsLikeMe on a survey that asked members how they felt about marijuana, and… Continue reading Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana”