Welcome to CreakyJoints.org
Welcome. I'm Seth Ginsberg. I'm not only a co-founder of CreakyJoints— I'm a member. I was diagnosed with Spondylarthritis (also known as Spondyloarthropathy) at 13 years of age. Thanks to a mother who'd drive her son to meetings so he could speak about healthcare issues, I got started on patient advocacy at a pretty young age.
One thing I've often wondered—maybe you have too—is why all the scientists and researchers never asked me how I was feeling or what I thought was important to study about my own disease. That's why it's a dream come true that CreakyJoints is now working with the world's top medical institutions to help find a cure for arthritis.
We're asking. We're listening. Now we need you to become part of the cure.
Please consider upping your participation at CreakyJoints and become a CreakyJointsPRO—"PRO" stands for "patient reported outcomes"—and join this all-important effort to eradicate arthritis. It won't take up much of your time. Every so often you'll answer questions about living with arthritis, how it impacts your life, what you've done to manage it, and what you need. No biggie.
If you're worried about privacy, all info will be shared with our study partners as a group without any personal identifying info. No one will know who you are—you have our word.
Please, let's share our experiences as a group with the people in charge, and together demand better access to care, more innovative treatments, and the respect we deserve as a community.