Launched earlier this year, the PatientsLikeMe Epilepsy community now has more than 3,000 patients. In honor of Epilepsy Awareness Month, here’s a snapshot of what patients like you are sharing and learning about in this community. Did you know… How are our members treating their condition? What are their major symptoms? What are they talking… Continue reading Epilepsy Awareness Month: What do you know about Epilepsy?
Category: Patient Experiences
Epilepsy Awareness Month: The Beauty and The Turbulence
Did you know November is Epilepsy Awareness Month? In honor of the month and to help raise awareness of epilepsy, here is the first in a series of blogs about our Epilepsy Community members’ experiences with this disease. To kick us off, let’s meet tonialpha, a three-star member and PRO who recently sat down with… Continue reading Epilepsy Awareness Month: The Beauty and The Turbulence
The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude
I don’t think about what I can’t do,I think about what I can do. – Cher441 Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for each… Continue reading The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude
The Patient Voice | Episode 4: Weaving An Inheritance
“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here! For our next interviewee, meet Aunti J. Like many others who contributed to… Continue reading The Patient Voice | Episode 4: Weaving An Inheritance
What Data Do We Sell? A Continued Discussion about “Data Scraping”
In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you – members of the PatientsLikeMe community – knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.… Continue reading What Data Do We Sell? A Continued Discussion about “Data Scraping”
The Patient Voice | Episode 3: When a Community “Becomes Family”
“I’ve met a lot of people from all over the world,we are all one happy family.” – Vigwig Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.” To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A few… Continue reading The Patient Voice | Episode 3: When a Community “Becomes Family”
Mental Health Awareness: What do you know about Mood Conditions?
In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on! DID YOU ALSO KNOW… How are our members treating their… Continue reading Mental Health Awareness: What do you know about Mood Conditions?
Mental Health Awareness: Interview with Mood Community Member, Marathoner452
Last week was Mental Illness Awareness Week. Did you know there are more than 18,000 patients in the PatientsLikeMe Mood Community? Stay tuned for another blog tomorrow with some interesting tidbits about this community. To warm us up, here is a recent newsletter interview we did with three-star member – marathoner452. Read on to find… Continue reading Mental Health Awareness: Interview with Mood Community Member, Marathoner452
The Patient Voice | Episode 2: The Warmth Of A Quilt
“When I saw the quilt, I was like, ‘Oh my gosh! It’s beautiful!’…I felt like I was visiting with all of these other people.” – BrownCat87 Wrap yourself up with the PatientsLikeMe Parkinson’s Disease quilt and Episode 2 of “The Patient Voice” podcast series. In our first episode, we heard from PokieToo, creator of the… Continue reading The Patient Voice | Episode 2: The Warmth Of A Quilt
PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)
Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics, scraped our forum last Spring. (See my previous blog post on the incident – “Transparency, Openness and Privacy“) Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more. … Continue reading PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)