From this year’s EULAR annual conference comes major news for people living with spondyloarthritis (SpA). Based on recommendations from a task force of European and North American patients, rheumatologists, dermatologists, and health professionals, new treat-to-target (T2T) guidelines for SpA were announced that emphasize the importance to set a target in shared decision making between a specialist and patient and carefully monitor the disease in order to improve a patient’s health outcome.
“The T2T recommendations are following the principle that you have to define a target you want to reach and adapt management to reach this target. This is independent of the treatment you use to reach the target,” said Professor Desiree van der Hejde, a professor at Leiden University Medical Centre in the Netherlands. Continue reading →
ACE is attending this year’s European League Against Rheumatism (EULAR) annual congress in Madrid. The city is currently experiencing above normal temperatures with highs near 40°C and the rheumatology topics inside the convention centre are equally hot. Our first dispatch from the meeting looks at the launch of the “Don’t Delay, Connect Today” early intervention campaign. At a joint session for patients, clinicians, and health professionals, attendees heard how all three groups can contribute to the early diagnosis and treatment of rheumatic diseases.
Commenting on the campaign, Cheryl Koehn, ACE President said: “This campaign, by our colleagues in the European Union, neatly parallels the work the arthritis community in Canada has undertaken through the models care initiatives of the Arthritis Alliance of Canada where we define early identification of inflammatory arthritis and access to care as a key element.”
The EULAR campaign will encourage patients with typical arthritis symptoms to take action and consult their doctors as soon as possible.
At a presentation on the campaign, John Church, CEO of Arthritis Ireland, explained: “With the development of powerful biologic medications, improvements in care pathways for patients and very effective self-care options, early diagnosis and intervention can lead to significant improvement in lifestyle, physical movements, increased well-being, and work force participation.”
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.”
In honour of Lupus Awareness Month, the Arthritis Broadcast Network is doing a throwback coverage on lupus. The coverage highlights Arthritis Research Canada and Arthritis Consumer Experts’ coverage of the 9th International Congress on Systemic Lupus Erythematous, Vancouver 2010 (“Lupus 2010”).The event was held in Vancouver, British Columbia, Canada in June, 2010. Hundreds of world leading researchers, healthcare professionals, and individuals living with systemic lupus erythematosus (SLE) learned about the current state of the science in SLE and future opportunities in lupus research, education and care.
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.