Arthritis Consumer Experts participated in the International Foundation for Autoimmune Arthritis’ May 20 World Autoimmune/Autoinflammatory Arthritis Day “virtual” race. The event saw dozens of nonprofits, advocates, and experts from around the world come together to provide educational and awareness information to patients, their supporters, and the general public.
The event reached 1,000’s of patients and supporters in 62 countries around the world, but the awareness doesn’t stop with the end of this event.
The US Arthritis Foundation states that with autoimmune and inflammatory types of arthritis, early diagnosis and aggressive treatment is critical. In addition, slowing disease activity can help minimize or even prevent permanent joint damage. The American College of Rheumatology & EULAR – European League Against Rheumatism work hard to keep treatment guidelines up to date in the United States. In Canada, Health Canada and the Canadian Rheumatology Association work together to ensure Canadians living with arthritis get the healthcare they need. All progression of these diseases is permanent and irreversible – so early intervention is necessary, not only to avoid unnecessary damage and disability, but to avoid overburdening an already exhausted healthcare system (regardless of country) that long term disability healthcare costs would add to the problems.
Arthritis Consumer Experts is honoured to be crowned one of #WAAD17’s Nonprofit Race Team winner and be ranked beside other patient organizations. Here is a list of this year’s winners: Continue reading →
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.”
Join the “virtual” race to increase public awareness of autoimmune arthritis
May 20 is World Autoimmune Arthritis Day (WAAD). The International Foundation for Autoimmune Arthritis established this commemorative date back in 2012. The virtual event unites dozens of nonprofits, advocates, and experts from around the world to provide educational and awareness information to patients, their supporters, and the general public.
Participants and partner organizations will participate in a virtual global race where they will visit social media and organizational websites and resources. WAAD is hosted on May 20th for the duration of all Time Zones (May 19th 6am EST – May 21st 5am EST). You can participate online on Facebook and Twitter and follow the event’s hashtag #WAAD17. On race day, help Team ACEwin the race and spread awareness:
The Michael Smith Foundation of Health Research and Arthritis Research Canada have partnered to co-develop and host a series of monthly expert-led, beginner-level KT training webinars with the goal of developing a sustainable resource for researchers and trainees to learn knowledge and skills that will enable them to develop KT practice in their work.
The next general election in British Columbia is scheduled for May 9, 2017. What change would you want to see?
Arthritis affects 1 in 5 British Columbia residents, so healthcare to treat the more than 100 different types of the disease is extremely important to the more than 600,000 British Columbians living with the disease. Any party that wishes to become government needs to consider these constituents. To help the parties understand this, Arthritis Consumer Experts (ACE) sent a questionnaire to the candidates of the 2017 BC Provincial Election.
Each of us has the power to change arthritis—together, we can change the way arthritis is perceived by the public, portrayed in the media, and understood by government. As people with arthritis, and their family members and friends, the arthritis community is in a unique position to provide media, government, and healthcare decision-makers with the real story of arthritis.
But none of us can do this alone. One or two voices may be easy to ignore, but speaking together we are powerful. The voice of arthritis—the voices of all of the people who live with the disease, or care about someone who does—is strong and getting stronger every day.
Please take the time to view the interviews below on patient advocacy and learn what passionate people and patient organizations are doing to promote arthritis awareness. Learn the facts about arthritis, and about the discrimination that people with arthritis face every day. Think about your own story, or the story of someone you love. When you’re ready, join with us and take action.
Challenge the misperceptions. Speak up. Tell your story. Change arthritis.
The interviews below are conducted as part of the “CRA Interview Series 2017 – Facebook Live #CRArthritis Speaker’s Corner” event at the CRA Annual Scientific Meeting & AHPA Annual Meeting in Ottawa earlier this month. Continue reading →