By Regina Greer-Smith,
volunteer patient advocate for CreakyJoints
After years of debilitating pain, I was diagnosed with osteoarthritis in 2012. For years, I attributed the pain in my spine and knees to:
Wearing mini-skirts during the 1970’s in the cold Chicago winter that lead to my knees “going bad”.
Wearing platform shoes that caused stress on the knees
Kneeling on hard pews at Sunday mass, twice a week for almost twenty years.
Arthritis is a catch-all term. It refers to both osteoarthritis, which is pain in the joints caused by injury or wear and tear, and autoimmune forms of arthritis, of which there are over 100 different diagnoses, such as rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis, to name just a few.
Of course, arthritis is incredibly common. According to the U.S. Centers for Disease Control and Prevention (CDC), 54.5 million adults have doctor-diagnosed arthritis, but that estimate may actually be “substantially underestimated” by as much as 68 percent, according to research published in the medical journal, Arthritis & Rheumatology (December 2017).
African Americans and Arthritis
The CDC says that arthritis causes more pain and limitations for African-Americans and Hispanics than for Caucasians. But even though people of color live with arthritis, data shows that African-Americans are 17 percent less likely to report having arthritis and Hispanics are 46 percent less likely to report the condition than whites. However, it’s vital that everyone, particularly African-Americans, to report suspect symptoms to their doctor. Why? Arthritis pain can be managed and joint damage potentially slowed with treatment. Further, people with arthritis are more likely to have other chronic conditions — such as obesity, diabetes, and heart disease — that also need treatment. These co-morbid conditions are known to be more prevalent in the African American population.
After years of pain and myriad excuses, in 2012, I finally sought advice from my primary care physician. Almost immediately, he referred me to an orthopaedic surgeon who diagnosed my pain as both osteoarthritis and scoliosis. It was a relief to land on that diagnosis because it started me down a path towards taking control of my pain, rather than it leading me around. But, I can’t lie. The next four years were challenging, as I tried a variety of different treatments ranging from physical therapy to knee injections to steroids. My pain would lessen, but my mobility continued to deteriorate. There was just so much damage in my joints. In 2013, I became medically disabled, unable to continue my career as a healthcare administrator, and in 2015, my pain forced me into a wheelchair for several months. Aggressive physical therapy put me “back on my feet”.
Arthritis caught me by surprise. I had no family history. To the day they died, my parents, aunts, and uncles were all very active, agile, and liked to dance and party. I believe my arthritis and inflammation has been exacerbated by some of my lifestyle choices (food, stress, and weight gain). I specifically sought and found an African-American female rheumatologist to work with, collaboratively, to make decisions about treatment and lifestyle.
I didn’t want to feel that I was alone in living with arthritis. But since no one in my family or circle of acquaintances had arthritis, I began to explore and research “arthritis” and other autoimmune conditions (I have those as well) online. That’s when I discovered the CreakyJoints community. CreakyJoints is an online, patient support community for people with all forms of arthritis. To me, the name CreakyJoints was a perfect description. It reminded me of my own condition.
CreakyJoints® – An Online, Active Community, not just another website.
CreakyJoints is an open community. It’s free to join and as soon as I started to engage with other members, I realized that I could find the support I was craving.
The organization offers a wealth of educational materials. In addition to their online library, which is specific to many different forms of arthritis, the organization offers a quick #Arthritis365 educational fact on Twitter and monthly “Twitter Chats” with experts.
For me, CreakyJoints helped me return to my “roots”. For example, I learned from one of their blogs that the Mediterranean Diet is the same or very similar to “Soul Food” (plant-based foods, beans, whole grains, fresh fruits, etc.). These are the foods that have been traditional to my African-American tradition and lifestyle. But as I got busy with life and career, I got away from these great foods. The education and support I found on CreakyJoints helped me return to my roots (and lose 37 lbs along the way).
Those seeking a deeper dive can download patient guidelines. In 2017, four different editions published on rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis and family planning with arthritis, respectively. More are planned in 2018 and beyond. The goal is to arm people with arthritis with unbiased and comprehensive information about the management and treatment of their arthritis, particularly if questions arise in between doctor appointments. Furthermore, the patient guidelines help patients navigate common insurance issues and offer advice about advocating for the arthritis community. The patient guidelines library is available at www.CreakyJoints.com/patientguidelines
ArthritisPower™ – You Have the Power to Make Change
Under the direction of the Patient-Centered Outcomes Research Institute (PCORI), which was created as part of the Affordable Care Act, CreakyJoints created the ArthritisPower Research Registry. ArthritisPower is a powerful tool. The free mobile application functions both as a disease tracker and a proactive way to contribute your personal health data to researchers and scientists who are aiming to better understand the arthritis community.
After you provide informed consent, ArthritisPower asks you to input “Patient Reported Outcomes.” Basically, you enter in data about your reaction to treatment, experience of symptoms, and general wellbeing. Because ArthritisPower is on your phone, it’s easy to complete an assessment anywhere, whether you are standing in line at the grocery store or waiting for a movie to begin. I can also share this data with my physician before an appointment, which promotes a data-driven conversation about how I am actually doing. Further, I can participate in arthritis studies offered right in the app.
I was so inspired by the opportunity to add to our understanding of arthritis, particularly in the African-American community, that I recently became an ArthritisPower Patient Governor. Periodically, myself and a board of arthritis patients meet with CreakyJoints and researchers to review the progress of ongoing studies and make recommendations for future studies. To learn more about ArthritisPower, visit ArthritisPower.org
Won’t Your Join Me?
Arthritis doesn’t go away. You can treat it, but you also have to learn to manage it over a lifetime. My husband and I made the decision to make some major changes to improve our long-term quality of life prospects. We moved from a 3-story suburban home in Illinois to a 55+ active lifestyle community in Southern California. The ranch style home is ADA compliant and it will serve us for many years. Today, my husband and I are eating better, and our stress level has decreased because I’m less worried about falling. Plus, we certainly can’t complain about the California weather!
Not everyone can make such a big change. But if you or someone you love is living with arthritis, I urge you to check out CreakyJoints. There, you can connect with other people living with arthritis, get involved with advocacy, and contribute to research. CreakyJoints is my trusted resource for information on my osteoarthritis and other autoimmune illnesses. But they are also my support network, which I have found to be very important as an African-American. Our community has experienced historical harm in research, as well as not seeking treatment as necessary or getting late diagnoses. Being included in research and being asked to provide input is very empowering.
I hope my story will encourage my community to make the decision to return to our “roots” of healthy eating, stress management, spirituality, and fellowship.