arthritis consumer experts

In this episode of Arthritis At Home, Cheryl Koehn, Founder and President, speaks to ACE’s VP Communications & Public Affairs, Kelly Lendvoy, about the highlights from the February 2024 issue of the JointHealth™ insight newsletter, including:

• the newly published State of Arthritis in Canada Report Card
• feature article on arthritis models of care gaps and solutions across northern communities in Canada
• a look at biosimilars cost savings reinvestment in the healthcare system

Additional learning resources

• JointHealth™ insight – Today’s arthritis experience in Canada: The view from the street
• The State of Arthritis in Canada Report Card

In this episode of Arthritis At Home, we are sharing the #CRArthritis interview with Dr. Maggie Larché, Professor, Divisions of Rheumatology and Allergy and Clinical Immunology, Department of Medicine, McMaster University, and Director, Canadian Scleroderma Research Group. She discusses about scleroderma, its symptoms and connection with Raynaud’s phenomenon.

Additional learning resources

• Scleroderma Canada
• Arthritis Consumer Experts’ about scleroderma page
• Arthritis Consumer Experts’ about Raynaud’s phenomenon page
• Canadian Scleroderma Research Group

In this episode of Arthritis At Home, Cheryl Koehn speaks to Dr. Jane Purvis, an Ontario rheumatologist and the Chair of Government Affairs Committee of the Ontario Rheumatology Association, about the biosimilars transition policy being implemented in Ontario. Dr. Purvis reminds our Ontario inflammatory arthritis patient audience that if they are affected by this policy, they have until December 29, 2023 to make the transition. During this transition period, Dr. Purvis also encourages patients not to wait until the last minute and make an appointment now to discuss what transition means for them, what their treatment options are and how to make a transition plan with their rheumatologist through in-person or virtual visits.

Additional learning resources

• Ontario Ministry of Health – Biosimilars: Information for Patients
• Biosimilars•Exchange: Canada’s trusted source for timely news and information on biosimilar biologics
• JointHealthTM education: Biosimilars Education Video Series

In this episode of Arthritis At Home, Kelly Lendvoy, Vice President, Communications and Public Affairs, Arthritis Consumer Experts (ACE), speaks to Ellen Wang, Programs Coordinator, ACE and PhD student at the University of British Columbia, about their experience leading the 9th annual #CRArthritis event at the 2023 Canadian Rheumatology Association and Arthritis Health Professions Associations Annual Scientific Meeting. Together, they highlight a handful of the exciting presentations in advocacy and disease research from researchers, clinicians and patient group leaders.

Additional learning resources

• JointHealth™ insight: Spring 2023 – The latest advances in Canadian arthritis research
• #CRArthritis Interviews – Parts 1-4
• Arthritis Broadcast Network
• MyTransition App

Made up of rheumatoid arthritis patient organizations and leaders from 18 countries, the Global RA Network (GRAN) was formed to build international relationships and identify and work on common goals and initiatives to improve the lives of people living with rheumatoid arthritis (RA) around the world. Arthritis Consumer Experts co-founded the Network in 2017 and serves as its Secretariat.

This episode of Arthritis at Home features Kelly Lendvoy, ACE’s VP Communications and Public Affairs and Isabelle Troïtzky, Programs Manager of the GRAN discussing the Network’s recent one-day annual Workshop held during the annual scientific meeting of the European Alliance of Associations for Rheumatology.

Additional learning resources

• Globa RA Network
• ACE National Survey on Arthritis and Health Inequities
• Inequities in Arthritis Care in Canada: An intersectional analysis of BIPOC women

Arthritis Consumer Experts (ACE) is thrilled to launch its new blog Joint Journeys, life with arthritis by Carrie. Insightful, inspirational, heart-warming and fun, Carrie’s pieces are beyond living with arthritis – they are about life’s everyday moments, the ups and downs of a life worth living. A brief pause to look at life with a fresh lens, a breath of fresh air in our day and that reminds us we are not our arthritis; we are human beings living life, with arthritis. Carrie’s pieces will touch on travel, gardening, raising a family, exercise, and adventuring, among other life moments.

In this episode of Arthritis At Home, Cheryl Koehn, ACE’s President, speaks with Carrie Barnes about her new blog, Joint Journeys, life with arthritis. They will talk about the origin of the blog concept and riff on why they think it fills a void in the current arthritis blogging scene.

Additional learning resources

• Joint Journeys, life with arthritis by Carrie
• About Carrie Barnes

In this episode, Kelly Lendvoy, VP Communications & Public Affairs speaks with Ellen Wang, ACE Programs Coordinator and Research Trainee at Arthritis Research Canada, about the presentation of an ACE research presentation (Abstract) at the annual scientific meeting of the European Alliance of Associations for Rheumatology (EULAR). 

The Abstract - Inequities in Arthritis Care in Canada: An intersectional analysis of BIPOC women – presents detailed findings from the ACE National Survey on Health Inequities on barriers to access, discrimination and healthcare provider interaction among BIPOC (Black, Indigenous, and Person of Colour) women living with arthritis in Canada.

Additional learning resources

• PowerPoint Presentation and Summary
• Arthritis Consumer Experts Survey on Arthritis and Health Inequities

Osteoarthritis (OA) is a degenerative joint disease that is the most common type of arthritis and a leading cause of chronic pain and loss of mobility in Canada. In the past, OA was often dismissed as an “old person’s” disease and caused by the inevitable “wear and tear” of the joints. In reality, OA affects approximately 5 million Canadians from youth to older adults.

Arthritis Consumer Experts’ National Survey on Osteoarthritis in Canada is just out of field and the report on the findings is featured in the Summer issue of JointHealth™  insight. This episode of Arthritis At Home features Ms. Ellen Wang, ACE’s programs coordinator, physiotherapy-health literacy PhD student, about osteoarthritis and the findings of the ACE Survey.

Additional learning resources

• ACE National Survey Report on Osteoarthritis in Canada
• ACE National Survey Infographic on Osteoarthritis in Canada
• Osteoarthritis Tool for Health Care Providers
• Talk to Your Doctor About Joint Pain Handout

Arthritis Consumer Experts’ About Arthritis website resource has helped thousands of people living with arthritis become more knowledgeable about the diagnosis, treatment and care of their disease. Many of those users have provided ACE with comments and feedback, which have been implemented into the new edition of About Arthritis.

Kelly Lendvoy, VP Communications & Public Affairs, and Ellen Wang, ACE Programs Coordinator, discuss the relaunch of About Arthritis, who ACE has consulted to review it, and the most up-to-date scientific information people will have access to organized under new headings in the website resource.

Additional learning resources

• ACE’s About Arthritis website resource  
• About Arthritis resource news release

In this episode of Arthritis At Home, Ellen Wang, Programs Coordinator, Arthritis Consumer Experts, speaks to Drs. Cari Whyne and Johnathan Lex. They have a conversation about how they are combining a database on outcomes and population data to create prediction models. These prediction models have the ability to improve the allocation or time and resources to improve the equity of joint replacement surgery. The research team thanks the Arthritis Society for the grant and patients for their contributions.

Additional learning resources

• Ignite Innovation Grants Summaries
• Sunnybrook Research Institute
• Holland Bone and Joint Program
• myHip&Knee app
• GLA:D™ Canada

Cheryl C. and Cheryl K. share key tools for thriving with arthritis, like finding ways to ask for help, developing health literacy, practicing self-compassion, and getting support. They also discuss the safety of modern medicine and how to balance it with complementary therapies to create an individualized plan for managing rheumatoid arthritis. 

 Additionally, they delve into the mental health techniques that have helped them cope, including: reframing exercises, and working past bias. Cheryl K. shared how she used her experiences to form Arthritis Consumer Experts, a patient-led and science-based organization with the goal of providing better education to people with arthritis.

Episode at a glance:

• Navigating chronic illness when the internet was just starting: Cheryl Koehn had an athletic background, but when symptoms struck she went to the library to do her own research and advocated for herself despite medical gaslighting.
• Trialing treatment options: Cheryl K. initially denied Western Medicine before she ended up with 36 active swollen joints within a year and progressively worsening quality of life. Following this, she received gold injections and other conventional DMARDs initially, adding in Methotrexate and later transitioning to newer medications like biologics as they became available.
• Coping with peer pressure: People trying to convince her that “natural is better” and to avoid medications, however natural isn’t inherently better at controlling disease and newer medications are backed by research. Cheryl C. and Cheryl K. discuss how a balance of complementary therapies and medication help people safely manage their conditions. Koen practices reframing exercises, works on explicit and implicit bias, and considers “what can I learn from this person today” with an open mind.
• Wisdom for newly diagnosed patients: Find ways to ask for help! Develop health literacy as a tool for advocating for yourself and to guide decision making.
• What does it mean to thrive with rheumatic disease: Practice self-love and self-compassion, love what you do, and give yourself room to breathe.
• Arthritis Consumer Experts (ACE): Cheryl K. used her experiences of running her own consulting firm, volunteering, and being on the board at the Arthritis Society to form this organization. Her goal is to provide better education to people with arthritis, and to not be the only person with arthritis with a say in arthritis organizations.

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 

See all the details and join the program or waitlist now!

For Full Episode Details Including Transcript:

Go to the Arthritis Life website

In this episode of Arthritis at Home, Mr. Kohle Merry, PhD candidate at the University of British Columbia, member of Arthritis Patient Advisory Board of Arthritis Research Canada, and a person living with osteoarthritis (OA) discusses the profound impact of OA on patients, the healthcare system, the economy, and the launch of ACE’s National Survey on Living with Osteoarthritis. 

The Survey deadline is April 14, 2023. Click here to take the Survey.

In this episode of Arthritis at Home, we speak to Cheryl Koehn, President, Arthritis Consumer Experts and Dr. Diane Lacaille, Scientific Director, Arthritis Research Canada to learn more about the re-launch of the Arthritis Broadcast Network (ABN) and new features.

Ms. Koehn and Dr. Lacaille also speak about the value of arthritis education for patients to become equal and active partners with their health care providers and have more satisfying experiences and better conversations on:

• preparing for medical visits
• setting treatment goals and choosing treatment options
• self-managing their overall treatment and care plan

Additional learning resources

• Arthritis Broadcast Network
• Arthritis Consumer Experts
• Arthritis Research Canada

People with arthritis are at higher risk for developing mental health issues. Researchers believe that pain, fatigue, and other symptoms aggravate mental health and reduce the ability to self-manage and cope with arthritis. In this episode of Arthritis At Home, Kelly Lendvoy and Ellen Wang discuss the ACE Survey on mental health. 

ACE hopes to understand what steps people living with arthritis can take to care for their mental health and what specific challenges they may face when accessing professional and timely care. The Survey is open to people living with any form of arthritis and will take approximately 10 minutes to complete.  The Survey deadline is June 8, 2022. 

Click here to complete the survey – https://www.surveymonkey.com/r/ACESurveyMentalHealth

New Brunswick on September 14th and Saskatchewan on October 26th are the first two jurisdictions in Canada to hold elections during the throes of the COVID-19 crisis. On this special episode of Arthritis At Home, ACE’s President, Cheryl Koehn, interviews ACE’s VP Communications & Public Affairs, Kelly Lendvoy, to gain insights into the unprecedented logistical and public health challenges the pandemic presents to campaigns and elections. “There’s no playbook for planning an election during a pandemic,” explains Lendvoy.

The two ACE leaders also look at how health care is debated during election campaigns and the importance of arthritis patients ensuring their voices and issues are heard and discussed.

For further information on upcoming provincial elections in Canada, please visit:

Arthritis Consumer Experts

Arthritis At Home: https://arthritisathome.jointhealth.org/

Taking Action Homepage – Provincial Elections: https://jointhealth.org/electionNewBrunswick2020.cfm?locale=en-CA

Elections New Brunswick: https://www.electionsnb.ca/content/enb/en.html

Elections Saskatchewan: https://www.elections.sk.ca

In this episode of Arthritis At Home, Maya Joshi and Cheryl Koehn discuss conquering anxiety and fear related to your arthritis and the process of showing yourself that you are more than your disease. Maya begins by explaining the physical and psychological barriers that have held her back in the past and then highlights the strategies that have helped her overcome these barriers, using the example of a recent canoe trip. 

Maya Joshi is the Programs Coordinator at Arthritis Consumer Experts and a student at the University of British Columbia. Maya was diagnosed with rheumatoid arthritis about 4 years ago just after graduating high school. Since then, Maya has become an active member in the arthritis community, always learning from and inspired by other patients, researchers and healthcare providers. Although she has experienced a number of disease challenges that have significantly impacted her life as a young adult, she is making exciting strides in her disease journey, working her way back to feeling like her “normal” self again.  

Helpful links

Arthritis At Home: https://arthritisathome.jointhealth.org/  

Mental health and arthritis: a complex relationship: https://jointhealth.org/programs-jhinsight-view.cfm?id=1231&locale=en-CA  

How to stay active and exercise at home during COVID-19 with Dr. Linda Li: https://arthritisathome.jointhealth.org/?p=590 

Patient resources for inflammatory arthritis: https://jointhealth.org/pdfs/ModelsOfCare_E.pdf 

We're excited to share the news that Arthritis Consumer Experts will be making #ArthritisAtHome episodes available on the go! 

Arthritis At Home is a JointHealth™ Education program launched in 2020 to share arthritis facts and news and allows you to hear directly from arthritis experts at home - where you live and feel most comfortable during the COVID-19 pandemic. 

You will get to meet many of the experts who over the past 20 years have informed and supported our education and information programming. Our invited guests will feature world experts in clinical rheumatology, arthritis scientists, physio and occupational therapists, psychologists, health economists, among other health subject matter experts. The program will also feature interviews with leading arthritis consumer-patient leaders and advocates who either work or volunteer in our community.

To learn more about the program, visit https://arthritisathome.jointhealth.org/