“Today [my son] Jake is living a wonderful life, an extraordinary life, and now I know that’s possible. When Jake was first diagnosed, we didn’t know that. Now I know that…and that we’re not alone.” – Actor Greg Grunberg, father of a 16-year-old with epilepsy When it comes to epilepsy, what do you know now… Continue reading Join the “Now I Know” Video Campaign for National Epilepsy Awareness Month
Tag: epilepsy community
Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published
Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting. In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for… Continue reading Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published
One for All: The Connected Community of PatientsLikeMe
PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data. So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports. We believe this enormous collection of health data will dramatically improve how patients manage their conditions. But there are more… Continue reading One for All: The Connected Community of PatientsLikeMe
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
Manage your epilepsy like a PRO
Ever wonder how epilepsy affects the patient — the whole patient? A patient-reported outcome (PRO) is a questionnaire commonly used in the clinical world to asses a patient’s quality of life (QOL) for research studies. Most of the time patients never get to see their test results, much less see them plotted over time. That’s… Continue reading Manage your epilepsy like a PRO