It’s April, which means it’s also Sjogren’s Awareness Month. Why do we need awareness? Around four million Americans have Sjogren’s, but less than half of those patients are diagnosed. Sjogren’s is often referred to as an invisible disease and despite patients’ severe discomfort, many don’t often see it as debilitating. This can be isolating for… Continue reading April is Sjogren’s Awareness Month
Category: Patient Experiences
Member voices: I have IBS, here’s what I do…
If you’re living with irritable bowel syndrome (IBS) you’re not alone. In fact, IBS affects up to 1 in 7 Americans, so chances are you may know someone who is going through the same thing. Despite it being so common, many people living with IBS are unaware that their symptoms indicate a medically recognized disorder,… Continue reading Member voices: I have IBS, here’s what I do…
Worth a thousand words: A day in the life of Larry
As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family… Continue reading Worth a thousand words: A day in the life of Larry
World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD
Today is World Parkinson’s Day, and 2017 marks the 200th anniversary of the identification of Parkinson’s Disease (PD). Meet Eileen Mack Thorley, a research scientist with a passion for PD research. By day, she works on a variety of research projects at PatientsLikeMe. On her own time, you might find her doing FaceTime with her… Continue reading World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD
PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases
CAMBRIDGE, Mass.–(BUSINESS WIRE)—PatientsLikeMe and Shire plc (LSE: SHP, NASDAQ: SHPG) have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease. Shire, the global leader in rare diseases and other highly specialized conditions, will work with PatientsLikeMe to appropriately engage… Continue reading PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases
World Health Day 2017: #LetsTalk about depression and mental health
Today is World Health Day! This year, the World Health Organization (WHO) hopes to spark discussions about mental health with their campaign called “Depression: Let’s talk.” Depression affects more than 300 million people of all ages, from all walks of life, in all countries – but less than half of people with depression (even less… Continue reading World Health Day 2017: #LetsTalk about depression and mental health
Paul Wicks on the power of sharing data
Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what… Continue reading Paul Wicks on the power of sharing data
Teaming up with LupusChick to boost chronic condition awareness
PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by… Continue reading Teaming up with LupusChick to boost chronic condition awareness
3 energy-saving tips for people with lupus
Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member. Here’s a roundup of energy-saving tips from a few different… Continue reading 3 energy-saving tips for people with lupus
Parkinson’s podcast: Member Gary talks music and movement with dancer Pamela Quinn
In a quest to learn about the benefits of music for people with Parkinson’s disease, we met Pamela Quinn, a professional dancer in New York City who was diagnosed with young-onset PD more than 20 years ago. These days, she teaches thriving dance classes in Brooklyn and Manhattan for people with Parkinson’s (check out her… Continue reading Parkinson’s podcast: Member Gary talks music and movement with dancer Pamela Quinn