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.”
BC PharmaCare is looking for your input on biosimilar etanercept (Erelzi) for the treatment of ankylosing spondylitis, juvenile idiopathic arthritis and rheumatoid arthritis
Biosimilar etanercept (Erelzi) is now being considered for coverage under the British Columbia Ministry of Health’s PharmaCare program. By filling out a questionnaire on a website called Your Voice, you can provide your input on biosimilar etanercept for the treatment of ankylosing spondylitis (AS), juvenile idiopathic arthritis (JIA) and rheumatoid arthritis (RA). You can give input if you are a B.C. resident and have AS, JIA or RA, a caregiver to someone with AS, JIA or RA, or if your group represents people who live with AS, JIA or RA.
A study published by researchers at the University of British Columbia suggests that rheumatoid arthritis (RA) patients are no longer facing a higher risk of death than the general population. The study analyzed mortality data and looked at death rates among RA patients versus deaths among a control group of the general population.
The study included an estimated 25,000 people. Patients were divided into two groups – the first one was those with RA cases diagnosed between the years 1996 and 2000 and the second group was those with RA cases diagnosed from 2001 to 2006. Researchers looked at and tracked doctor visit records and other patient information through the year 2010.
“Preventing Rheumatoid Arthritis (Pre-RA): perspectives of people with RA, people at risk and of rheumatologists” study
Join the study as a patient with RA or first-degree relative
A research study funded by the Canadian Rheumatology Association’s Initiative for Outcomes in Rheumatology cAre (CIORA) wants to understand the perspectives of people with RA, those at risk of RA and health care providers about potential treatments aimed at preventing rheumatoid arthritis. Arthritis Consumer Experts is a partner organization on the project.
- Aged over 18?
- Someone with rheumatoid arthritis OR you have a first degree relative (parent, sibling, adult child) with rheumatoid arthritis?
- Someone with access to a computer and the internet?
Participate in a new study that will use wearable activity trackers, paired with a new web application, and physical activity counselling to help you get more active!
Rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) are types of inflammatory arthritis that causes inflammation and deformity of the joints, and affects your immune system. Physical activity can help to decrease pain and disability in joints affected by RA and SLE while benefiting your overall health.
If you are a person living with RA or SLE, and are interested in getting more active, we invite YOU to participate in the OPAM-IA study. Through participating in the OPAM-IA study, you will learn how to get active with RA or SLE. You will be asked to attend an education session, use a Fitbit Flex activity tracker with the new web application, and receive counselling from a registered physiotherapist. The total time commitment for the study is 6 months.
If you are interested, please fill out a 2-minute screening questionnaire.All responses will remain confidential, and you will be contacted by a research staff member within 48 hours to discuss your eligibility further.
For more information, contact Navi Grewal, study coordinator at 604-207-4053 or 1-844-707-4053 (toll free), or via email at email@example.com.
Image courtesy of karate at FreeDigitalPhotos.net/
Sarilumab (Kevzara®) is now approved in Canada to treat moderate to severely active rheumatoid arthritis
Health Canada has approved a new treatment for Canadians with moderate to severely active rheumatoid arthritis. Sarilumab (Kevzara®) was issued its Notice of Compliance on January 12, 2017. Click here to view Health Canada’s Summary Basis of Decision.
Sarilumab (Kevzara®), an interleukin-6 receptor antagonist, has been approved for the treatment of adult patients with moderately to severely active rheumatoid arthritis who have had an inadequate reponse or intolerance to one or more biologic or non-biologic Disease-Modifying Anti-Rheumatic Drugs (DMARDs).