Cheryl Koehn presented the Qualman-Davies Arthritis Community Leadership Award at the Arthritis Alliance of Canada Annual Meeting, held in Vancouver on Thursday and Friday, October 26 and 27, 2017.
Ms. Louise Bergeron is the recipient of the 2017 Qualman-Davies Arthritis Consumer Community Leadership Award. It is with a great sadness that the award was presented posthumusly. Louise’s son accepted the award at the Arthritis Alliance of Canada Annual Meeting.
Louise was diagnosed with lupus in her late 30’s and began volunteering in various arthritis-related patient groups.
Louise also offered volunteer service to various research networks in under-served groups, including representing the perspective of people living with systemic autoimmune rheumatic diseases, which included involvement in the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) and Lupus Canada. In her work with Dr. Paul Fortin, she co-developed “MyLupusGuide”, a web platform dedicated to informing persons with lupus and promoting their self-care. Louise was highly involved as a consumer with CIHR as a peer reviewer and participated in numerous research projects either as a collaborator or as a subject matter expert. She also contributed in the writing and publishing of many reports on consumer involvement in arthritis research.
Louise was a valued mentor to patients helping them become advocates for themselves and to the broader Canadian arthritis community. In 2013, Louise was awarded a Queen’s Diamond Jubilee Medal for her outstanding volunteer work on behalf of the arthritis community.
ACE launches first of three new blogs to help you “power up” your arthritis knowledge, get more connected to the community, and learn the latest about health policy and politics affecting our group of chronic diseases.
As Canada’s largest national patient-led organization and provider of evidence-based information and education programming, ACE is always looking for better ways to “power up” Canadians living with arthritis.
As always, we want to know what you think. We encourage you to share feedback and offer topics of interest for future blog posts.
We hope you had a great Arthritis Awareness Month in Canada!
Is your mouth a gateway to getting arthritis?
When Health Canada’s Canadian Institutes of Health Research was created in 1994, I, like many, was puzzled that they included oral health along with musculoskeletal health in the research pillar known as the Institute for Musculoskeletal Health and Arthritis (IMHA). After all, what do researchers trying to solve the thousands of mysteries that make up “arthritis”, a group of over 100 different diseases, have to do with teeth. But were they ever smart to do so; the latest research shows the mouth and the joints are definitely connected.
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!
Arthritis Consumer Experts’ 10th Annual Arthritis Medications Report Card and Medications Guide: The changing landscapes of reimbursement for arthritis medications in Canada
Arthritis Consumer Experts (ACE) has released its 10th Annual JointHealth™ Arthritis Medications Report Card and Medications Guide – the reliable, quick reference tool to help you evaluate where your province ranks in terms of providing reimbursement for medications to treat inflammatory forms of arthritis.
Commenting on the changing landscape for reimbursement of arthritis medications, ACE President, Cheryl Koehn stated: “Any new pharmaceutical policy that promises to deliver significant drug plan savings must do so without compromising patient safety and efficacy. ACE has also consistently advocated that any drug plan cost savings related to changes in policy that affect arthritis medication reimbursement access should be reinvested back to drug formulary budgets to support the listing of new arthritis medicines and other non-medication related initiatives to improve models of arthritis care such as creating rheumatology nursing billing codes.”
The JointHealth™ Arthritis Medications Report Card and Medications Guide gives you information on the most commonly prescribed medications for inflammatory types of arthritis, such as rheumatoid arthritis, axial spondyloarthritis, psoriatic arthritis or juvenile idiopathic arthritis.
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.”
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.
En ce temps des Fêtes, alors que toute l’équipe se penche sur les 17 années passées à servir les Canadiennes et Canadiens touchés par l’arthrite, le comité ACE (Arthritis Consumer Experts) souhaite également partager avec vous les plus récentes informations sur la recherche et souligner nos programmes pour 2017. Vous trouverez donc dans ce numéro du JointHealth™ insight :
Le message de remerciement tout spécial de la part de Cheryl Koehn, fondatrice et présidente du comité ACE (Arthritis Consumer Experts)
La revue de toutes les réalisations du comité ACE en 2016
Une présentation des nouveaux cours Éducation JointHealth™ sur l’arthrite psoriasique et la spondylarthrite ankylosante
Une nouvelle recherche et étude de cas sur les biosimilaires
Une explication du concept de « données du monde réel »
« Au nom de tous les membres de l’équipe ACE et des membres de son Conseil consultatif d’experts scientifiques et médicaux et de personnes atteintes d’arthrite, je tiens à vous remercier encore une fois de votre intérêt soutenu, de votre participation généreuse et du soutien que vous apportez à nos travaux. Nous vous souhaitons un joyeux temps des Fêtes et l’amélioration de votre santé en 2017. » – Cheryl Koehn
This season, as we reflect on our 17 years serving Canadians with arthritis, Arthritis Consumer Experts wants to also share with you new research information and highlight 2017 programs. In this issue of JointHealth™ insight, you will find:
A special thank you message from Cheryl Koehn, Founder and President of Arthritis Consumer Experts
A review of ACE’s accomplishments in 2016
An introduction to new JointHealth™ Education programs for psoriatic arthritis and ankylosing spondylitis
New research and case study on biosimilars
An explanation of “real world data”
“On behalf of my ACE team members and our Scientific, Medical and Consumer Advisory Board, I want to thank you again for your interest, participation and support of our work. We wish you a joyful holiday season and improved health in 2017.”
Les personnes atteintes d’arthrite doivent réagir. Ensemble, nous devrons faire sortir notre maladie du placard et commencer à en parler, très abondamment.
Au cours d’un récent dîner, un bon ami à moi me confiait quelque chose d’assez révélateur : « Je ne te considère pas comme handicapée ». Pour lui, son commentaire était plutôt un compliment. Mais pour moi, il illustre l’ampleur de cette fausse perception très répandue à propos de la douleur arthritique comme étant un « état » associé au vieillissement et qu’on ne peut pas vraiment traiter. Son commentaire m’a également rappelé à quel point les personnes atteintes d’arthrite, souvent embarrassées à propos de leur maladie, vivent la douleur arthritique en silence, et cela, en dépit du fait que l’arthrite, une maladie invalidante et la cause principale de l’incapacité de travail au Canada, affecte plus de 4,6 millions de Canadiennes et de Canadiens et restreint de près de 20 pour cent les activités de nos concitoyens. Continue reading →
People with arthritis need to take action. Together, we need to pull our disease out of the closet and start talking about it.
At a recent dinner party, a good friend of mine said something revealing to me: “I don’t think of you as disabled.” My friend’s comment was meant as a compliment but also reflected the still common misperception of arthritis pain as a “condition” associated with getting old and that can’t really be treated. It also reminded me how people with arthritis are often embarrassed about it and live in silence. This in spite of the fact that arthritis affects more than 4.6 million Canadians, is a debilitating disease and the leading cause of work disability in Canada and limits the activities of nearly 20% of Canadians.
I have had rheumatoid arthritis for 27 years and while I have learned to live it, my life is a far cry from what it once was and what I wanted it to be. In my work, I try to build “pride” in everything ACE does. Still for reasons we have no “movement” but not because we’re not proud. Continue reading →