When it comes to arthritis, better education often leads to better diagnoses
(BPT) - Rachelle Crow, of Chesterfield, Michigan, is living proof that autoimmune and rheumatic diseases can affect people of any age. She first sought help for painful joints as a 19-year-old college student, but received a confusing diagnosis of osteoarthritis, something typically associated with older adults. Unsatisfied with her diagnosis, she actively searched for more information about her condition and found support via an online group who understood her symptoms and questioned her initial diagnosis.
“When I was diagnosed with arthritis, I looked for support and, thankfully, found CreakyJoints,” Rachelle says. “Communicating with other patients educated me about my disease and pushed me to ask good questions of and seek a better diagnosis from my doctor. Once we realized that what we first thought was osteoarthritis was actually related to inflammatory arthritis, it allowed us to better address my treatment. When you join CreakyJoints, you find a community who understands what you are going through and I’m grateful that I tapped into all that firsthand knowledge.”
Inflammatory arthritis is an autoimmune illness that causes your body’s immune system to start attacking tissues instead of germs, virus or other foreign substances, which can cause pain, stiffness, joint damage and many other complications due to widespread inflammation. It can occur at any age and is more common in women than men. Ten years following her initial diagnosis, Rachelle faces numerous challenges managing her inflammatory arthritis, but this mother and former special education teacher is combating her diseases just as she faces other challenges in her life – by continually seeking out education, and supporting others in the way she was supported by the non-profit CreakyJoints community, herself.
In fact, now Rachelle is focused on expanding the influence of patients in health care by serving as a CreakyJoints Patient Governor to support the development and launch of a new patient-led research project called Arthritis Power. Arthritis Power is the first ever patient led, patient-centered research database for arthritis, and it is a collaborative effort between researchers at the University of Alabama at Birmingham and CreakyJoints that is supported by the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization created by Congress in the Patient Protection and Affordable Care Act of 2010.
Offering 21st Century-style convenience and mobility, Arthritis Power data will be collected using a smart phone, laptop, desktop or tablet where there is an internet connection. As patients track their symptoms over time - a convenient way of self-monitoring changes in fatigue, pain and physical activity - they are also securely donating their data. This information will be used by universities, research facilities, physicians and others to better understand how patients measure treatment success and satisfaction, to compare treatments, identify new treatments and, perhaps, find elusive cures.
Usually patients with RA or other musculoskeletal conditions learn about opportunities to participate in research, such as clinical trials, from their doctor. Arthritis Power will proactively offer a variety of clinical trial opportunities and patients can decide when and how to participate.
“Patient-centered clinical research means that the research questions being asked are important to patients to help them make informed healthcare decisions,” says Louis Tharp, Executive Director of CreakyJoints and its parent organization, Global Healthy Living Foundation. “Though it’s called Arthritis Power, we’re also seeking people living with arthritis and other related bone, muscle, skin or joint conditions, such as fibromyalgia, lupus, psoriasis and many others. The more people who join and share their data, the more powerful the registry will be!”
It is the idea of learning from real patient experiences that most excites Rachelle about the future of arthritis treatment. “Patient-led research, like Arthritis Power, is important because patients can express how research will directly impact their lives. But in addition to advancing arthritis research, what I particularly like about the application is that I can access my personal data and send progress reports to my physician, which means we can discuss my ups and downs during check-ups. I anticipate this will make for very productive conversations.”
If you are living with rheumatoid or inflammatory arthritis, or other musculoskeletal conditions and are interested in joining the Arthritis Power Research Network, visit www.ArthritisPower.org. It is free to download and participate. To learn more about CreakyJoints, an online arthritis patient community supporting more than 80,000 members through support, blogs, research updates and education, innovative advocacy and global research projects, visit www.CreakyJoints.org.