“When I woke up, my hands were gone.” That’s how Adriana Grasso described the numbness she experiences as part of her MS. It’s so severe that she doesn’t even know what it feels like to hold someone’s hand. As she says, “A simple thing that we take for granted – touch – it’s gone, and… Continue reading Seeing [MS]: The invisible symptoms – numbness
Tag: multiple sclerosis
PatientsLikeMe study monitors walking activity in people with MS
Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS… Continue reading PatientsLikeMe study monitors walking activity in people with MS
Seeing [MS]: The invisible symptoms – balance
Describing her loss of stability and balance is difficult for Carol Cooke. One moment, she might be walking, and the next, she’ll fall to the ground. As she says, “I just want to get up and keep going,” but that’s not possible due to the symptoms of her multiple sclerosis (MS). Listen to Carol speak… Continue reading Seeing [MS]: The invisible symptoms – balance
Getting to know our Team of Advisors – Deb
You’ve been introduced to five members of the PatientsLikeMe Team of Advisors so far: Karla, Emilie, Becky, Lisa and Dana. This month, meet Deb, a freelance medical writer who was diagnosed with multiple sclerosis (MS) in 2009. Learn about her journey and what being a part of the Team of Advisors means to her. About… Continue reading Getting to know our Team of Advisors – Deb
Myths vs. facts about multiple sclerosis
Stop! What do you know about multiple sclerosis (MS)? That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that… Continue reading Myths vs. facts about multiple sclerosis
Hacking our way to new and better treatments with integrated biology
When it comes to discovery and healthcare advancements, too many of us are more focused on the processes we use today rather than at a first principals level looking and what’s possible. We are a sector desperately in need of disruption to accelerate the generation of knowledge and lower the costs of developing new treatments… Continue reading Hacking our way to new and better treatments with integrated biology
March is Multiple Sclerosis Awareness Month
Multiple sclerosis (MS) affects more than 2.5 million people worldwide, and in the United States alone, about 200 new people are diagnosed each week. Those are just a couple of the many reasons why the Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month. What more do we know about MS?… Continue reading March is Multiple Sclerosis Awareness Month
Seeing [MS]: The invisible symptoms – brain fog
Australian Jessica Anderson has been living with multiple sclerosis since she was 12 years old, and she says brain fog is the scariest symptom she experiences, especially not being able to gather and make sense of her own thoughts. During her worst moments, she can barely focus on a thought for more than 30 seconds.… Continue reading Seeing [MS]: The invisible symptoms – brain fog
PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange
Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by… Continue reading PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange
Seeing [MS]: The invisible symptoms – fatigue
“It’s like I’m deflated. I don’t feel like doing anything.” That’s how Darcy McCann says he feels on most days. He’s a young Australian who was diagnosed with multiple sclerosis [MS] at the age of 10, and his most debilitating symptom is fatigue, which comes and goes as a result of his nerves being constantly… Continue reading Seeing [MS]: The invisible symptoms – fatigue