PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness.… Continue reading If you could share one thing… -Steven’s inspiring answer
Tag: patient voice
“Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013
It’s no secret that here at PatientsLikeMe, we think that the voice of the patient — your voice — is the number one way to drive medical advancements. At TEDMED 2013, our very own Sally Okun shared that message on one of the world’s largest stages. She asked the audience a very simple question. “Does… Continue reading “Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013
TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE
FOR IMMEDIATE RELEASE TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE PatientsLikeMe Releases First in Series of Reports on Real-World Patient Experiences with Top Multiple Sclerosis Drugs CAMBRIDGE, Mass. — September 22, 2011 — In the first report of a series on Multiple Sclerosis (MS) disease modifying therapies(DMTs), PatientsLikeMe reveals that nearly two-thirds (64%)… Continue reading TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE
Treat Us Right: Mapping What Patients Think About Medications
One of the ways we can better understand whether you, as patients, are having a positive or negative treatment experience is to “listen” to the conversation you’re having in our forum. By understanding whether you are having a positive, negative, or neutral experience with a particular treatment you are taking or are considering taking, we… Continue reading Treat Us Right: Mapping What Patients Think About Medications
Share and Compare: From the mouths of patients
As we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in. You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing… Continue reading Share and Compare: From the mouths of patients
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 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
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?
The Patient Voice – Loud and Clear
We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient. In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members. … Continue reading The Patient Voice – Loud and Clear