Bienvenue au réseau de diffusion sur l'arthrite Arthritis Research Centre of Canada Arthritis Consumer Experts

The 1-minute survey to help launch the Physical Activity Support Kit Initiative website

Share your favourite “go to websites for physical activity information and guidance

A team of health and fitness professionals, researchers and patients partners from throughout BC have worked together to create a repository of online resources to guide and motivate people living with chronic health conditions to be physically active. To help them finalize their soon to be launched Physical Activity Support Kit Initiative (PASKI) website, they’re asking people with arthritis and other chronic conditions to take their 1-minute survey. Share your favourite “go to websites” for physical activity information and guidance. Survey closes February 8, 2019.

Please take the survey here: www.surveymonkey.com/r/8NRWCGR

Follow the conversation online:
Twitter: @PASKI_toolkit
Facebook: www.facebook.com/paski.toolkit.3

Keeping active with arthritis: a key to improved physical and mental health

Much has been said and written about the importance of exercise for our health and wellbeing. However, for people with arthritis, it also can help manage symptoms. While people with arthritis may be reluctant to exercise fearing joint damage, exercise is especially crucial for people living with all forms of arthritis disease. In fact, exercise is a vitally important part of a well-rounded arthritis treatment plan.

For people living with arthritis, pain, body weight, age and lack of knowledge about appropriate types of exercises may be hurdles to getting started on an exercise program. Another barrier is the lack of recommendation and referral for exercise by physicians. A Canadian study of osteoarthritis patients showed that only one third had been advised to exercise by their doctor. However, exercise has numerous physical and mental health benefits and there are no specific exercises that should be avoided by people with arthritis. 

One of the most important benefits of exercise is weight management, which helps to improve body image and can improve the symptoms of arthritis, especially of osteoarthritis. If a person is heavier than their ideal body weight, even a small amount of weight loss can help reduce both the risk of developing certain types of osteoarthritis and the chances of osteoarthritis worsening with age. 

For everyone, exercise helps to improve heart and lung function, but for people living with arthritis, a variety of types of exercise can help to reduce joint pain and control joint swelling. These include:

  • Range of motion exercises help to keep the joints mobile and are also useful for helping to prevent injuries.
  • Weight bearing exercises can decrease bone loss, keep weak joints stable, and reduce the risk of osteoporosis.
  • Aerobic exercises, such as walking, help with weight loss. As well, exercise can help make it easier to fall asleep and to sleep more soundly.

In addition to improved physical health, exercise has many psychological benefits. Pain can seem more pronounced when we are unhappy or upset and exercise can help reduce depression. Additionally, it can improve self-esteem and self-confidence, improve the ability to relax, improve mood and wellbeing, and promote a good body image. Exercise also provides a good outlet for dealing with stress and anxiety. 

Research suggests that most types of physical activity do not cause or worsen arthritis. In contrast, a lack of physical activity is associated with increased muscle weakness, joint stiffness, reduced range of motion, fatigue and overall reduced physical fitness. 

Once a regular pattern of exercise has been established, it is important to maintain this pattern.

In order to get the benefits of exercise, it is vital to stay active.

Research shows that in people with osteoarthritis, once exercise stops, the reduced pain and disability they were experiencing ends.

To ensure that you keep up with a routine of exercising, consider joining a group program or bringing a friend or family member along to motivate you.

Eight ways to get started exercising:

  1. Try to choose a type of exercise, or an exercise program, that you enjoy. It will be much easier to stick to the program if you like what you are doing. Most types of activities are helpful for people living with arthritis, so feel free to do your favourite things such as walking, swimming, golfing, or gardening. Exercise doesn’t have to be strenuous or boring to be good for you.
  2. Community centres can be a terrific resource. Flip through the lists of classes offered at your local community or aquatic centre to find activities that best suit your interests and physical abilities.
  3. You may find that having a partner to exercise with will be more motivating. Research tells us that people are more likely to stick with exercises if they bring along a friend or family member.
  4. Sometimes, having a detailed list of activities and realistic goals will help motivate you, so it may be useful to get a referral to a physical therapist to create an appropriate exercise regimen that suits you and your body. Also, keeping an exercise log can help you and your therapist monitor your progress.
  5. For some, assistive devices such as splints or orthotics may be helpful for protecting your joints while you exercise. An occupational therapist can be a good resource.
  6. Before beginning a new exercise program, it is a good idea to speak with your doctor or health care provider to determine the most appropriate exercise or activity for your needs and capabilities. Also, be aware that during flare-ups it is important not to over-stress and over-work joints, which may cause more pain. For this reason it is important to speak to your doctor about exercise and the types of exercises most suitable.
  7. Try setting a firm goal and then rewarding yourself when you achieve it. For example, set a goal of swimming 5 laps. When you reach that goal, reward yourself, and then set a new goal of swimming 10 laps. Rewards can be anything that is meaningful to you: setting aside time for yourself, treating yourself to a massage or a good book, or going out for a meal with friends.
  8. Acknowledge your effort. Be proud of yourself for taking an active role in your health care.

RA Matters at Work Event continues tour in Toronto and Montreal.

Free Registration: ramattersatwork.eventbrite.com

Register for this free event to hear and learn from inspirational women living with arthritis and leading health professionals! 

300,000 Canadians live with rheumatoid arthritis (RA), and women are affected two to three times more often than men. For many people living with RA, career continuation and advancement can seem out of reach.

To bring attention to the triumphs and challenges of people working with chronic diseases like RA, Women in Biz Network and Eli Lily Canada are partnering on a nationwide series of empowering events called #RAMATTERSATWORK.

Join them for an evening of lively discussion between inspirational women living with arthritis and their health experts. Speakers will share stories of difficulty and triumph while thriving in the workplace, and challenge the negative beliefs and self-doubt associated with living and working with a chronic disease. Stay tuned for panelist announcements! 

Join us and the conversation at #RAMATTERSATWORK

Toronto Event
Date: February 25, 2019, 5:45pm-8:30pm
Location:
Westin Harbour Castle
1 Harbour Square
Toronto M5J 1A6
Free Registration:ramattersatwork.eventbrite.com

Montreal Event
Date: February 26, 2019, 5:45pm-8:30pm
Location:
AC Marriott Montreal Centre-Ville
250 Lévesque Blvd W
Montreal H2Z 1Z8
Free Registration:ramattersatwork.eventbrite.com

JointHealth™ insight – December 2018


Happy Holidays from ACE!

A time to give thanks, reflect on the past, and look forward to the future

“’Tis the season” when our thoughts turn to sharing, caring and remembering; a perfect time to thank all of Arthritis Consumer Experts’ members, subscribers, research partners and supporters for their ongoing engagement and support. Together, we remain committed to helping people living with arthritis across Canada through research-based information and education. 

“When you help a person living with arthritis, you are passing on the message that “you are not alone, we are with you, don’t be afraid.” That message needs to be shared not just during the holidays, but throughout the year.

Today, arthritis is Canada’s most prevalent disease and it’s far more serious than most people realize. Approximately six million adults – one in five – have doctor-diagnosed arthritis. Two-thirds are under the age of 65. Arthritis and musculoskeletal conditions are the leading cause of work disability in Canada. In other words, we are a “big deal” to the health care system and to society.

In 2019, ACE will remain focussed on helping all Canadians living, playing, working and raising families with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, osteoarthritis and the many other forms of the disease. As it has for the past 20 years, our work will reflect your needs and aspirations. As Canada’s largest and longest running patient-led arthritis organization, we will continue to fight for the rights of people living with the disease; to work with healthcare professionals and governments to develop services and policies that reflect a world as seen through our eyes and experiences; to inform the implementation of models of care to better help patients like us in their disease journeys; and to volunteer and work side-by-side with Canada’s brightest arthritis researchers and knowledge translators.

Over the past two weeks, you’ve graciously shared your wishes as part of ACE’s #MyArthritisWishList social media campaign – sincerest thanks for your participation in this fun and inspiring campaign. Your wishes remind us that when you live with arthritis, that means “every day, all day.” For many of us there are days with no break from pain, stiffness, depression, relationship challenges; the list is long. Yet, despite it all, we rise above from a deep reservoir of resilience.

“The worldwide arthritis community is my hero.”

Every day, I’m constantly inspired by our arthritis community, made up of people who are brave, funny, brilliant, insightful, industrious, and so many other wonderful qualities. People trying to be all that they can be, while also trying to kick arthritis to the curb. The worldwide arthritis community is my hero.

On behalf of everyone at ACE, I wish you joy and peace this holiday season.

Sincerely
Cheryl Koehn
Person with rheumatoid arthritis
Founder and President of Arthritis Consumer Experts


Arthritis Consumer Experts’ Year in Review

In 2018, Arthritis Consumer Experts (ACE) worked to improve the lives of people living with arthritis through education, empowerment and advocacy. With help from the arthritis patient community, healthcare professionals, researchers and partner organizations, ACE submitted patient inputs to CADTH and provincial drug plans, participated in conferences, workshops and webinars, launched JointHealth™ Education Advanced Therapies, provided updates from the American College of Rheumatology and European League Against Rheumatism annual meetings, and advocated on behalf of our community with public and private health policymakers.

Thank you to our members and subscribers for making 2018 one of the best years yet! Here are the monthly highlights from this year and some holiday tipsto get you through the rest of the year.

Fermez les yeux et visualisez votre liste de souhaits liés à l’arthrite (#MyArthritisWishList)

Des déplacements sans douleur peut-être ? Plus de solutions pour aider les personnes atteintes d’arthrite ? En cette période des Fêtes, partagez avec nous votre liste de souhaits liés à l’arthrite !

Cette année, pour sa campagne des Fêtes, le comité ACE (Arthritis Consumer Experts) vous demande de partager votre liste de souhaits liés à l’arthrite en utilisant le mot-clic de sa campagne : #MyArthritisWishList. Le comité ACE fera de même en espérant que ce partage fera avancer la recherche et nous mènera vers le plus d’avancées possibles dans le domaine médical. Voici quelques souhaits qui nous sont parvenus la semaine dernière :

« J’aimerais bien que mon médecin de famille mette dans la salle d’attente des documents d’information/ressources à la disposition des personnes atteintes d’arthrite. » – abonné ACE, #MyArthritisWishList

« Ma fille est atteinte de polyarthrite rhumatoïde et prend l’autobus pour se rendre à l’école tous les jours. On la regarde de travers quand elle insiste pour avoir un siège. J’aimerais bien que les gens comprennent que l’arthrite est une maladie qui n’est pas nécessairement apparente. » – Une maman inquiète, #MyArthritisWishList

Pour participer à la campagne #MyArthritisWishList, vous pouvez :

  • nous envoyer un courriel pour nous parler de votre ou vos souhaits liés à l’arthrite : feedback@jointhealth.org
  • partager votre souhait sur Facebook ou Twitter et y inclure le mot-clic #MyArthritisWishList
  • partager, aimer et commenter les publications affichées sur #MyArthritisWishList

Nous fournirons un résumé des souhaits de la campagne #MyArthritisWishList le 8 janvier 2019 et nous engageons à utiliser cette liste pour orienter, pendant l’année à venir, nos efforts de programmation en matière d’information, de recherche et de défense du dossier de l’arthrite.

C’est un appel à travailler tous ensemble et à exprimer haut et fort l’espoir que les souhaits de chacune de nos listes soient exaucés cette année !

Close your eyes and ask yourself: “What’s on #MyArthritisWishList?”

Do you want to travel pain-free? Do you wish there were more ways to help people living with arthritis? Share your wish list with us this holiday season!

For this year’s holiday campaign, Arthritis Consumer Experts (ACE) is asking you to share your arthritis wish list using our campaign hashtag #MyArthritisWishList. ACE will do the same, and hope that through continued community sharing, research and medical advances are possible. Here are a few wishes from last week:

“I wish my family doctor would make arthritis resources available in the waiting room.” – ACE Subscriber, #MyArthritisWishList

“My daughter lives with rheumatoid arthritis and buses to school every day. She gets dirty looks when she asks for a seat. I wish people understood that arthritis is an invisible disease.” – Concerned mother, #MyArthritisWishList

To participate in the #MyArthritisWishList campaign, please:

  • Send an email to feedback@jointhealth.org and tell us your arthritis wish or wishes
  • Share your wish on our Facebook or Twitter and include the hashtag #MyArthritisWishList
  • Share, like, and comment on #MyArthritisWishList posts

We will provide a #MyArthritisWishList summary on January 8, 2019, and promise to use it as ACE’s guiding light for our advocacy, research and information programming over the next year.

Here’s to speaking out and working together to make everyone’s arthritis wishes come true!

Demande de rétroaction de patients sur le baricitinib (Olumiant®) dans le traitement de la polyarthrite rhumatoïde, de modérée à grave 

stick man with megaphone for patient inputSouffrez-vous de polyarthrite rhumatoïde, de modérée à grave ? Vos commentaires seraient précieux.

Le programme commun d’évaluation des médicaments (PCEM) invite actuellement les patients et leurs fournisseurs de soins à faire parvenir aux organismes représentant les patients leurs suggestions et commentaires sur la présentation par le fabricant du baricitinib (Olumiant®) dans le traitement de la polyarthrite rhumatoïde, de modérée à grave.

Le PCEM fait partie de l’Agence canadienne des médicaments et des technologies de la santé (ACMTS). Le PCEM examine avec objectivité et rigueur l’efficacité et la rentabilité des médicaments et fournit des recommandations aux régimes d’assurance-médicaments publics du Canada (à l’exception du Québec) quant à leur inscription sur la liste des médicaments assurés.

Afin de l’aider dans son processus de recommandation, le PCEM accepte la rétroaction d’organisations et de groupes de patients comme le comité ACE (Arthritis Consumer Experts). Parce que la rétroaction de patients est essentielle à la prise de décision du gouvernement sur le remboursement des médicaments, nous désirons recueillir vos commentaires pour communication au PCEM.

Si vous êtes atteint de polyarthrite rhumatoïde ou prodiguez des soins à quelqu’un qui en souffre, n’hésitez pas à nous faire parvenir vos commentaires d’ici le mercredi 16 janvier 2019 pour que nous soyons en mesure de soumettre un rapport avant la date limite du 18 janvier. Vos commentaires demeureront anonymes.

Veuillez nous faire part de vos commentaires en répondant au questionnaire ci-dessous ou en communicant avec nous à feedback@jointhealth.org, ou appelez au 604 974-1366 pour une entrevue téléphonique.

Répondez au questionnaire

Voici l’information que recherche le PCEM dans ce dossier particulier : Continue reading

Call for patient input on baricitinib (Olumiant®) for moderate to severe rheumatoid arthritis 

stick man with megaphone for patient inputDo you have moderate to severe rheumatoid arthritis? We need your valuable input.

The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for baricitinib (Olumiant®) for moderate to severe rheumatoid arthritis.

The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).

To help them make their recommendations, the CDR accepts input from patient organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with the CDR.

If you live with rheumatoid arthritis or care for someone with rheumatoid arthritis, please send us your input by Wednesday, January 16, 2019, so that we may make a submission by the January 18th deadline. Your input will be anonymous.

Please submit your input by completing the questionnaire below or contact us at feedback@jointhealth.org to provide your input or arrange for a phone interview at 604-974-1366.

>>> Take the questionnaire.

These are the questions they are asking: Continue reading

JointHealth™ insight – numéro novembre 2018

Rapport spécial : l’arthrite dans la population active canadienne 

French JHI Slide
Dans le dernier numéro du JointHealth™ insight, le comité ACE (Arthritis Consumer Experts) livre un rapport sur l’arthrite chez la population active canadienne.

Au Canada, l’arthrite constitue la principale cause d’incapacité au travail, entraînant une piètre qualité de vie et des pertes d’emploi. Les membres ACE nous ont raconté leurs histoires émaillées d’efforts constants pour s’acquitter de leurs responsabilités au travail tout en gérant leur maladie, en particulier leurs symptômes tels que la douleur, la fatigue et la raideur, souvent accompagnés d’un déclin progressif des fonctions physiques.

Selon Statistique Canada, on estime à 13 milliards $ le coût annuel de l’incapacité de la population active due à l’arthrite et aux maladies musculosquelettiques. Les études ont démontré que plusieurs personnes ayant reçu un diagnostic de polyarthrite rhumatoïde (PR) sont contraintes de quitter la population active de façon prématurée et gagnent un salaire moins élevé que les personnes qui n’en sont pas atteintes.

Ce numéro du JointHealth™ insight couvre cet important sujet de l’arthrite au travail et traite également des sujets suivants :

  • Discussion sur les récipiendaires d’un prix Meilleurs milieux de travail au Canada pour les employés atteints d’arthrite : le Gouvernement du Yukon et l’Université de Montréal.
  • Regard sur l’impact de l’arthrite sur la population active au Canada et les défis les plus courants auxquels sont confrontés les employés qui en sont atteints.
  • Entrevue particulière avec Dre Lacaille à propos de son programme éducatif en ligne Making it Work™, conçu pour aider les personnes atteintes d’arthrite inflammatoire à gérer les défis liés à l’arthrite au travail.

JointHealth™ insight – November 2018

Special Report: Arthritis in the Canadian Workforce 

JHI Slide

 

In the latest issue of JointHealth™ insight, Arthritis Consumer Experts (ACE) reports on arthritis in the Canadian workforce.

Arthritis is the most common cause of work disability in Canada, resulting in both poor quality of life and workplace limitations. ACE members have told us about the challenge of managing workplace responsibilities while managing their disease, including symptoms such as pain, fatigue, and stiffness, often with a gradual loss of physical function.

According to Statistics Canada, the estimated annual cost of workplace disability from arthritis and musculoskeletal conditions is $13.6 billion. Studies have also shown that many people diagnosed with rheumatoid arthritis (RA) are forced to leave the workforce prematurely and earn less than those living without the disease.

This issue of JointHealth™ insight covers the important topic of arthritis in the workplace, and includes:

  • A discussion on the 2018 winners of Canada’s Best Workplaces for Employees Living with Arthritis award: The Government of Yukon and Université de Montréal.
  • A look at the impact of arthritis on the Canadian work force, and common challenges faced by employees with arthritis.
  • A special interview with Dr. Lacaille about her online education program, Making it Work™. The program is designed to help people with inflammatory arthritis deal with employment issues related to their disease.