Rheumatoid arthritis is a long term disease, so long term coping tools are necessary.
When Stacy Courtnay first learned she had rheumatoid arthritis (RA), she couldn’t envision herself speaking to other people with the disease. “When I first discovered I had it,” she says, “my mom volunteered to do some work with the Arthritis Foundation, but I wanted no part of it. I said to myself, I don’t want to be around other people as miserable as I am.”
Now, as part of a new pilot program created by the Arthritis Foundation and the American College of Rheumatology (ACR), Courtnay does much more than speak to other people living with RA. As a patient advocate, she speaks to doctors and researchers and helps them develop a better idea of what it is like to live with the disease.
“Recently, I attended the ACR conference with the Arthritis Foundation,” Courtnay says, describing her role in the ACR Arthritis Foundation Patient Representative Program. “It’s the first year they have ever had patients be part of the conference,” she says, noting that there had long been a need for patient input.
“Sue Schrandt of the Arthritis Foundation told me a story about a previous year when researchers were demonstrating an auto-injector. When you take a drug like Humira [adalimumab], you pinch your stomach fat, put the auto-injector on it, and the auto-injector shoots the needle in really fast. The auto-injector was amazing for people like me, because it was hard to draw out the serum and put the needle in my stomach and push the syringe.
|Source: Failed Rheumatoid Arthritis Treatments Inform Medical Research | Everyday Health|