seizure types

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 charting seizures, and 30% felt they received better healthcare as a result. In addition, 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.  (Check out our press release for more on this survey, which we conducted with our partner UCB.  PatientsLikeMe and UCB launched the epilepsy community in 2010.) Now, we’re pleased to announce that our full survey results have been published as an open access article in the scientific journal Epilepsy & Behavior.  This gives you and anyone interested in epilepsy the opportunity to dig deeper into our findings.  For example, another interesting discovery is that one in three epilepsy patients surveyed did not know a single other person with their condition.  That is – until they joined PatientsLikeMe.  Survey respondents reported the benefits of using an online community to find other patients like them, and strikingly, …

Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published Read More »

Epilepsy Awareness Month: What do you know about Epilepsy?

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… You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic. You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening. Others in the community have indicated a causative comorbidity for their condition, such as: Head injury (242 patients to date) Brain tumor (70 patients to date) Stroke (38 patients to date) Encephalitis (34 patients to date) 543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago. Nearly 500 patients have completed the first in a series of surveys that measure their mental, physical and social well-being. (See “Manage your epilepsy like a PRO”) As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental …

Epilepsy Awareness Month: What do you know about Epilepsy? Read More »

Scroll to Top