Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe. The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000… Continue reading Raise Your Hands for Rare Disease Day
Category: ALS
What Is Health?
It seems like a basic question, but at PatientsLikeMe, we’ve spent a lot of time thinking about what it means. Check out Co-Founder and Chairman Jamie Heywood’s thought-provoking presentation below at the Swiss Re Centre for Global Dialogue’s “Future of Human Longevity” conference. Can you really understand concepts such as health, mobility or well-being without… Continue reading What Is Health?
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… Continue reading Coping with Changes in Physical Appearance
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… Continue reading Live Better Together in 2013
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… Continue reading A Patient Poem for the Modern Age
Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling
Earlier this month, PatientsLikeMe Co-Founder and President Ben Heywood, along with marketing intern Jenna Tobey, went to visit the Steve Saling ALS Residence, which is part of the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, MA. The foundation has been providing high-quality care for over 90 years and includes the nation’s only specialized… Continue reading Out of the Office: PatientsLikeMe Visits ALS Pioneer Steve Saling
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,… Continue reading Not Recognizing the “New Me”
PatientsLikeMe at the 2nd Annual White Coat Affair for ALS TDI
On Friday, November 2nd, several PatientsLikeMe team members donned their finest to attend the 2nd Annual White Coat Affair, a charity gala benefiting the ALS Therapy Development Institute (ALS TDI). Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS, also known as Lou Gehrig’s… Continue reading PatientsLikeMe at the 2nd Annual White Coat Affair for ALS TDI
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… Continue reading Honoring Family Caregivers Everywhere
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… Continue reading What’s Positive About Disease?