“Onlyness. It’s not a word in the English dictionary, but it should be.” We sat down with author, TED Talk speaker and innovator Nilofer Merchant to talk about her new book The Power of Onlyness, and the role that the PatientsLikeMe story plays in it. Advocating for “Onlyness” Nilofer has been championing the idea of “Onlyness”… Continue reading “You’re the only expert of your own life and your own body.” Author Nilofer Merchant shares why she featured PatientsLikeMe in her new book
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Why these 5 Olympians with health conditions are #1 in our hearts
The 2018 PyeongChang Olympic Games have come to a close. Did you happen to catch any of these 5 Olympians with health conditions (recently highlighted in The Mighty)? Their performances were inspiring — but their perspective on living with illness is what’s really golden. U.S. pairs figure skater Alexa Scimeca-Knierim developed a rare, life-threatening gastrointestinal disorder that caused episodes… Continue reading Why these 5 Olympians with health conditions are #1 in our hearts
MS research: What’s the latest?
Keeping tabs on the latest MS research isn’t always easy. So, our team of in-house health professionals took a closer look into some of the treatments in the research pipeline for people living with MS. Most of these treatments are in the final phase of clinical development — phase III clinical trials. In this phase,… Continue reading MS research: What’s the latest?
What products help people live better with Parkinson’s disease? A room-by-room round-up
Over the years, PatientsLikeMe members living with Parkinson’s disease have discussed a lot of products and ideas for living better with PD. From kitchen knives and eating utensils to shoe horns and shoelaces, we’ve compiled a list of tools you’ve talked about for (almost) every room in the house and many different aspects of life.… Continue reading What products help people live better with Parkinson’s disease? A room-by-room round-up
10+ ways to make your wheelchair work better for you
Wheelchairs aren’t always built with the best patient experience in mind. But many PatientsLikeMe members are sharing about the creative hacks and useful accessories they’ve used to make their wheelchairs better suit their needs. Here are some suggestions — how many have you tried? Making it more comfortable: Egg crate cushions, it’s really important to… Continue reading 10+ ways to make your wheelchair work better for you
Putting together an MS emergency bag: What’s on your must-have list?
From managing incontinence to temperature changes and sudden muscle weakness, many people living with MS have items they can’t live without. Some PatientsLikeMe members have started carrying an emergency bag with all the essentials to deal with inconvenient MS curveballs. Check out their suggestions: Instant ice packs Mint gum (helps one member “cool down”) Change… Continue reading Putting together an MS emergency bag: What’s on your must-have list?
Behind the scenes at PatientsLikeMe! Take a peek at user research (aka usability testing)
Have you noticed changes on PatientsLikeMe in the past year? (We’re guessing you’ve spotted quite a few.) Did you know that we involve members in testing out various features or updates to the site before rolling them out? We do! Member Barbara’s user research session with Kris Engdahl, principal user researcher (left), and Nicole Barron,… Continue reading Behind the scenes at PatientsLikeMe! Take a peek at user research (aka usability testing)
Light therapy for depression: What is it, and how does it work?
Bright light therapy is a treatment that’s become increasingly common for treating seasonal affective disorder, a condition that impacts many during the winter months. We sat down with our in-house research specialist to discuss light therapy – what it is, how it works and if it can help treat other types of depression in addition to… Continue reading Light therapy for depression: What is it, and how does it work?
Primary care that treats mind and body? It’s happening in Alaska
Integrated care for both mind and body under one roof? It may sound pie in the sky, but it’s really happening at an award-winning healthcare center in Anchorage, recently featured in Politico. How does it work? And can it be replicated? A shining example in Anchorage “It’s a truism that the mind and body are connected,… Continue reading Primary care that treats mind and body? It’s happening in Alaska
“We are all connected”: Check out this new video starring the 2018 Team of Advisors
Have you had a chance to meet the 13 members selected to join the 2018 Team of Advisors? Get a glimpse of the dynamic group in this new 2-minute video, and keep an eye on the PatientsLikeMe newsfeed and Facebook page for their individual videos and stories. This group will be collaborating with us in the next year to offer… Continue reading “We are all connected”: Check out this new video starring the 2018 Team of Advisors