Did you know that PatientsLikeMe is located up in Boston? For us New Englanders, the end of September isn’t just about falling leaves and colder weather; it’s also about Restless Leg Syndrome (RLS) Awareness Day. On September 23rd, medical organizations all across the world will join together to raise awareness for this health condition, which affects ten percent of people in the United States and millions more in other countries.
RLS, also known as Willis-Ekbom Disease (WED), is a neurological condition that primarily affects a patient’s legs and causes an irresistible urge to move them to relieve unpleasant sensations. All this week, we are encouraging everyone to help raise awareness and share their experiences with RLS. And we’re not the only ones – the Willis-Ekbom Disease Foundation is spreading the word by launching a brand-new website to teach peopleeverything there is to know about RLS. The International RLS Study Group is also participating in a series of conferences in Valencia and Vienna to share research findings and other information with the worldwide medical community.
There are more than 1,500 members in the RLS community on PatientsLikeMe who are sharing their experiences with medication, side affects, symptom management and more. Together, we’re learning about RLS and what it’s like to live with this neurological condition.
Find and connect with other patients like you in our neurological and brain forums, and click here to get the full scoop on RLS Awareness Day.
You’ve probably seen some recent posts about PatientsLikeMe’s new Open Research Exchange. Medical researchers will be using our ORE website to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will have an opportunity to give feedback on their work, putting them – the patients – at the center of new medical research.
We wanted to take a quick second to introduce our blog followers to ORE pilot researcher Dr. William Polonsky and share his recent podcast interview with everyone. One of the first clinical health psychologists in the U.S., William has dedicated his career to helping patients with diabetes, conducting research to examine the disease’s critical psychological factors, and lecturing and training healthcare professionals so they can help patients help themselves. The scale he wants to develop on ORE is what he calls the WHY STOP scale. It’s an attempt to understand if you’re eating a meal, how do you decide you’re done?
Most important, William wants to know how new diabetes medications seem to affect people’s satiety, or how full they feel when they eat. On ORE, William aims to create the first instrument to understand when and how these medications affect people, and how other patients can make better use of them.
We’ll be sending out invites next week, so if you’re living with type 2 diabetes and want to add your voice to William’s research, just create a PatientsLikeMe profile. Already a member? That’s great! Just be sure to sign into your profile this weekend and we’ll send an invite along.