Epilepsy

Epilepsy “Rescue Medication” Survey results are in

PatientsLikeMe recently partnered with Acorda® Therapeutics to research how epilepsy patients respond to seizures using rescue medications, and we’re happy to announce that the results are in. Rescue meds are a type of medication used once a seizure starts to help end it faster or prevent further seizures. Has there been any 24-hour period in […]

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Coping with Changes in Physical Appearance

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight

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New Efforts Underway to Improve Care for Veterans

With financial support from UCB, the Department of Veterans Affairs and PatientsLikeMe will study patient-reported outcomes. CAMBRIDGE, Mass. — Jan 22, 2013 — Today, the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with

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Live Better Together in 2013

Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions. You’ll hear us talk more

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A Patient Poem for the Modern Age

Can you be friends with someone you’ve never met in person? The members of our online health community – now 300, 000+ patients strong – think so.  In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone. As evidence, here

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Not Recognizing the “New Me”

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help. Have you found yourself feeling resentful when family,

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A Day in the Life of Health Data and Patient Safety Clinical Specialist Christine Caligtan

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Christine Caligtan, RN, MSN, a registered nurse who has served as our Health Data and Patient Safety Clinical

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Honoring Family Caregivers Everywhere

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness? November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the

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What’s Positive About Disease?

It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness.  In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we

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Join the “Now I Know” Video Campaign for National Epilepsy Awareness Month

“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

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