I know this may sound hokey but I believe in research. Basic research. You know the kind where scientists investigate and collect data to discover why something really ticks. Indeed, basic research is the first step to solving medical issues. I don’t think I’m over-the-top if I say the data that researchers collect is the keystone to knowledge and understanding. And when it comes to solving medical issues, I believe patient driven research the most meaningful of all.
So did my mother.
My mom who passed from the complications of type 1 diabetes always believed that she needed to show her doctors the cause and effect of various treatments. Over the years my mother volunteered for basic research opportunities related to diabetes. Even during her final few years she had an experimental procedure done to improve medical understanding of the treatment of retinopathy (a complication of diabetes that cost my mother her eye sight). The procedure did not work, but she never regretted it. Her belief was that her operation would result in better understanding of how to correct blindness in People with Diabetes (PWD).
I am proud of my mother’s various contributions to medical understanding of disease. Despite overwhelming odds against success my mother knew that when she reported her results faithfully she was giving her doctors valuable insight into treatment options for her as well as others. Today when I see an insulin pump, or hear of new treatments in diabetes care I often think of my mother, because I know some of those outcomes were the result of her contributions to diabetes medicine.
30 years after my mother’s passing, my belief in research and its possibilities remains strong. It is why I am so supportive of the Arthritis Power Registry being offered on the CreakyJoints web site.
What is Arthritis Power?
Research means everything for the future treatment of those of us with rheumatoid arthritis and other conditions of the joints, bones and skin. Most of us had few chances to join research related to RA—until Arthritis Power.
Think of Arthritis Power as a giant reservoir of data that researchers at the University Alabama at Birmingham may access when they have specific scientific questions that need to be answered. This data is from us, people living with RA or other conditions. We often say we are our own best advocates, we know more about our body than anyone else. Arthritis Power gives us the chance to report our symptoms on our own terms. Our reports can then be assembled into large blocks of data that can be studied and the findings disseminated to scientists, doctors and patients worldwide to improve life with chronic conditions.
Before Arthritis Power, I had searched the federal database weekly for local opportunities to join RA studies in my area. Usually when I find them, they involve the very difficult choice to go off my current biologic drug for a new TNF inhibitor or a TNF inhibitor delivery process. Because my current biologic is working so well and because I had such a negative reaction to a TNF inhibitor, I can no longer use that class of biologics. Thus I am ruled out of studies at the outset or if not ruled out, I am skeptical of trying a new drug being studied.
Arthritis Power gives me an opportunity to impact RA research without changing my current drug regimen and with the added benefit of giving real time information to our doctors. I am very excited because I can now participate in finding a way forward for RA researchers.
Join the effort to beat RA and improve our lives
I hope you will join me in participating in Arthritis Power. Our shared responsibility is to those who come after us. When we act together we can move scientific understanding and treatment of arthritis much, much further.
When used correctly Arthritis Power tracks your observations about how you feel and the intensity of the symptoms of rheumatoid arthritis and other musculoskeletal conditions. When you sign up, you are presented several questions about how you are feeling. It took about 15 minutes for me to use Arthritis Power. Each question was well-designed and garnered insight into how I was feeling, what I was able to do, and how often I could do it.
Then as I check back in with Arthritis Power (I do it weekly), I answer the same questions again to get a running synopsis of how I am doing, compared to how I was doing the last time I signed in. I can then print out my summary over time and take it to my doctor for review. By recording results like these over time, we can demonstrate to doctors how we are responding to treatment, our symptoms are changing with circumstances and our quality of life changes with treatment. When we participate with Arthritis Power we are giving ourselves a convenient way to demonstrate time lapsed changes in our symptoms and treatment for ourselves, for our doctors, and for outside researchers.
How to find out more about Arthritis Power
You can learn more about Arthritis Power by going directly to www.ArthritisPower.org. You can also browse the articles under the “Research Hub” tab on the CreakyJoints website. When you register to become part of Arthritis Power, you can choose to sign in using the same information you used to sign into CreakyJoints in order to avoid entering all of the same information twice. Once enrolled in Arthritis Power, you become part of this innovative patient-led, patient-centered rheumatoid arthritis research network that allows you to track your own symptoms while contributing to scientific study.