By Whitney White
I distinctly remember when the pain first hit me. Of course, I didn’t know it was rheumatoid arthritis – at first I thought the pain in my hands and feet was from the physical strain of caring for my two young children all day. But I began to realize it must be something more when it didn’t go away after a week or so. I tried different things, but nothing really helped. Then the memories of my childhood came flooding back, growing up with a mother who had been diagnosed with RA when I was about six months old.
Could it be the same for me, too?
I was in the car with my sons when I got the call with my lab results – I pulled to the side of the road when I heard the nurse’s voice on the other end. “Your lab work is back, and it suggests that you have RA. We are referring you to a specialist.” Time stood still as I hung up the phone. I think a part of me knew what the results would be, given my symptoms and family history, but it was still difficult to hear. I immediately sought out a great rheumatologist who would help devise the best treatment plan for me. This early detection and treatment were key to the excellent results I have had since diagnosis.
Being confronted with a chronic disease that has the ability to debilitate and disfigure was a tough thing to process, but I was determined that the disease would never define me or take control of my life. I chose to fight back and I decided to use my experience to help others in any way I can.
Through my physician, I found out about CreakyJoints, an education, support, advocacy and patient-centered research organization for people with all forms of arthritis and rheumatic disease. And now I play a real part in research with their Arthritis Power mobile app and website. It’s a research network that gives the arthritis patient community the ability to suggest ideas, help design studies, and contribute to research that focuses on the questions patients have about their conditions and treatment. It is research by patients, for patients. For example, a study might look at patients’ quality of sleep on certain arthritis medications. All I have to do is self-report my data in the app and I’ve contributed to the study. It’s easy, yet powerful.
There are similar research networks for many chronic conditions within the National Patient-Centered Clinical Research Network (PCORnet). There is a whole page devoted to Patient-Powered Research Networks.
I believe in the power of patient involvement in research to improve the treatment of disease in a way that reflects what patients like me value most. This new approach to research has the potential to propel us into a brave new world where “research” moves beyond data collected by scientists in a lab, but crosses over into real-life, giving patients the chance to contribute meaningful ideas that produce results that matter to us.
I believe my future as a patient living with RA—and the future of so many others—will be better as a result of patient-centered research networks like Arthritis Power.
Whitney White is a member of CreakyJoints and serves as a patient governor for Arthritis Power. Whitney received her B.S. in Biology from Mississippi College in 2003 and her Doctor of Pharmacy from Samford University in 2008. She currently practices as a Clinical Pharmacy Specialist in adult medicine at St. Vincent’s Birmingham.