Innervoice.life is a website dedicated to telling the inspiring stories of athletes describing their journeys to health, discovery and personal victories. Below is an excerpt of the most recent “innervoice” story, featuring ACE President and Founder Cheryl Koehn.
Picture from Innervoice.life
EMOTIONALLY AND SPIRITUALLY
I no longer play competitive volleyball, or any other sport for that matter. But the inner high-performance athlete is alive and well inside of me, and helps me overcome challenges every minute of every day. Not long after I retired from competitive volleyball, I developed severe rheumatoid arthritis (RA), an autoimmune disease that leads to uncontrolled inflammation and joint swelling, immobility and eventual destruction. From the day I was diagnosed, something inside of me said “don’t stop moving, keep trying to do the things you love”. Little did I know, that perspective is what research would prove years later: high intensity exercise in the setting of moderate to severe rheumatoid arthritis is a good thing, as long as you protect your joints from improper movement or stress, or when they are actively inflamed.
I approach my life with rheumatoid arthritis the exact same way I did my competitive sporting life. Emotionally and spiritually, I can be tougher than the toughest times I face. I may not be able to do half of what I used to physically, but I have finely honed team skills that help me in the community development work I lead. I recognise that overcoming a challenge requires thoughtful planning and work, and then more work, before you can “win”. Nothing came easy for me on the volleyball court, and the same is true in life. I know that is very cliché, but clichés exist for a reason; they’re usually true!
Canadian folk artist Maud Lewis is a legend in Nova Scotia and in our eyes, a role model to people living with juvenile arthritis. The story of Maud Lewis came to life on the big screen with Maudie, a biopic released in June. The movie features Sally Hawkins as Lewis and Ethan Hawke as her husband Everett. The film, directed by British filmmaker Aisling Walsh and written by Canadian screenwriter Sherry White, focuses on Lewis’s resilience as an artist, despite hardships. The pictures in this article is from Artsy‘s editorial The Joyous World of Overlooked Canadian Folk Artist Maud Lewis.
Photo from Artsy: Maud Lewis, Oxen in Spring, ca. 1960s. Courtesy of the Art Gallery of Nova Scotia.
Maud Lewis (1903-1970) grew up in the seaside town of Yarmouth, Nova Scotia. She was diagnosed with juvenile arthritis at a young age. Her arthritis left her with a pained and crooked gait. People would make fun of her because she looked and walked different. Her arthritis pain forced her to stay indoors at her parents’ home. It was here that she began to draw.
Everyday Health featured an article about Cheryl Koehn, Founder and President of Arthritis Consumer Experts. In the article, Cheryl Koehn shares her story to help others with RA learn from the mistakes she made, such as missed symptoms, diagnosis denial, and treatment delays. Below is an excerpt of the Everyday Health feature:
What Rheumatoid Arthritis Taught an Olympic Volleyball Player
Cheryl Koehn, with Molly, an Australian Labradoodle, started Arthritis Consumer Experts to help improve RA education.
Is denial a common response to a rheumatic disease diagnosis? Cheryl Koehn will be the first person to tell you that she had trouble accepting her diagnosis of rheumatoid arthritis (RA). After all, as a teenager, she was already an elite volleyball player, competing with the U.S. Junior National Team. She earned a four-year scholarship at the University of Washington in Seattle. But by age 27, just a few years after playing a competitive sport at a high level, she needed to sit in the handicapped seat on the bus to get to work. “The toughest part of accepting it,” Koehn says, “was that when I began to look into the disease, I didn’t see anyone like me.”
The Lack of Arthritis Education and Awareness
It was this experience that led Koehn to create Arthritis Consumer Experts, a Vancouver-based organization dedicated to helping those with arthritis to increase their health literacy and to understand what they are facing. “I put off treatment for about a year after my diagnosis,” Koehn says. “If my health literacy were much higher then, I probably would have made different choices.”
“I fought RA pain with my passion,” said Lady Gaga in the Spring 2017 issue of Arthritis magazine. Rheumatoid arthritis (RA) is an autoimmune disease with hallmark symptoms of inflammation and resulting pain. It is a disease process (like cancer or diabetes) where the body’s immune system mistakenly attacks its own healthy joints. It is a relatively common disease-approximately 300,000 or 1 in 100 Canadians get it-and is often devastating to a person’s body if not treated properly. The disease process causes swelling and pain in and around joints and can affect the body’s organs, including the eyes, lungs, and heart. Rheumatoid arthritis most commonly affects the hands and feet. Other joints often affected include the elbows, shoulders, neck, jaw, ankles, knees, and hips. When moderate to severe, the disease reduces a person’s life span by as much as a dozen years. To learn more about the disease, please click here.
In 2013, Lady Gaga had to cancel part of the Born This Way Ball world tour to get surgery after suffering a massive joint tear and hip breakage. At the time, she thought the pain was the result of a labral tear and an inflammatory condition called synovitis. She told Women’s Wear Daily: “My injury was actually a lot worse than just a labral tear. I had broken my hip. Nobody knew, and I haven’t even told the fans yet.” Continue reading
A recent study from McMaster University found that middle-aged adults living with a combination of arthritis, heart disease, diabetes, and/or depression are more likely to experience disability and limited involvement in society.
The research was conducted by Lauren Griffith, an associate professor in the Department of Clinical Epidemiology and Biostatics and the McLaughlin Foundation Professorship in Population and Public Health. Researchers from McMaster University published the study in the Journal of Epidemiology and Community Health. They found that physical and mental chronic diseases, alone or in combination, were associated with disability and reduced social participation. The results differed by gender and age. Continue reading
Venus Williams, despite life with Sjögren’s syndrome, and teammate Rajeev Ram takes home the silver medal for mixed doubles in tennis in the Olympic games. Though Williams was denied the gold medal by fellow Americans Bethanie Mattek-Sands and Jack Sock, she will always be a hero to the arthritis community for her battle against Sjögren’s syndrome.
Sjögren’s syndrome is an inflammatory autoimmune disease (like arthritis) in which white blood cells—the body’s immune system—attack moisture-producing glands. Most often, this results in dry eyes and mouth, although it can also affect the joints and muscles, and organs including the liver, pancreas, kidneys, lungs, stomach, and brain. Continue reading