When it comes to arthritis, better education often leads to better diagnoses

Rachelle Crow, of Chesterfield, Michigan, is living proof that autoimmune and rheumatic diseases can affect people of any age. She was, surprisingly, first diagnosed with osteoarthritis when she was a 19-year-old college student and in the years since, her symptoms were more accurately diagnosed as inflammatory arthritis (along with several other co-morbid illnesses). 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.  

Rachelle faces numerous challenges for a young woman in her 20s, but this mother, teacher, former special educator and behaviorist is combating her diseases just as she faces other challenges in her life – by seeking out education.

“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.”

While Rachelle is pleased to have a better diagnosis for herself, now she is focused on expanding the influence of patients in health care and health-care policy for everyone. One of the ways she is doing this is by serving as a patient governor and supporting patient-led research project Arthritis Power, a collaboration between researchers at the University of Alabama at Birmingham and CreakyJoints.

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 using the application, they are also securely donating their data. This information will be used by researchers and scientists to better understand how patients measure treatment success and satisfaction, to compare treatments, identify new ones, and, perhaps, find elusive cures.

“Patient-centered clinical research means that the research questions being asked are important to patients to help them make informed health-care 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 Rachel 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 http://arthritispower.creakyjoints.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.


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