Newsletter – June 2023

Arthritis in 2SLGBTQQIA+

People in Canada

Guest blog by Anna Samson

We are now at the end of Pride Month and we’re reflecting on what we can do to better support people with arthritis that are part of the 2SLGBTQQIA+ community. Anna Samson (they/she), a writer and advocate that lives with Ankylosing Spondylitis, wrote this blog post about Arthritis in 2SLGBTQQIA+ People in Canada. If you identify as part of the 2SLGBTQQIA+, feel free to let us know (confidentially) what we can to better support you.

What have we been up to?

Survey about your experiences with Patient Support Programs – Patient Support Programs are provided to people with inflammatory arthritis (like Ankylosing Spondylitis, Systemic Lupus Erythematosus, Rheumatoid Arthritis) who take a biologic or a biosimilar in Canada. We want to know about your experiences with Patient Support Programs to identify gaps in services and your education needs. Share your opinions by completing this 10-15 minute survey today!

COVID-19 poll – Our COVID-19 poll is still open so let us know what the precautions you are taking and what your COVID-19 action plan and experience looks like. We developed this international poll with Global Healthy Living Foundation and Creaky Joints Australia.

Pain Talks with Chronic Eileen – We are continuing our Pain Talks series where we interviewed Chronic Eileen (Eileen Davidson) about what it’s like to live with chronic pain and advice she has for others. Learn more about Chronic Eileen, her blog, and the Arthritis Social Hour, by visiting her website.

Get Involved!

Augmented reality study – Researchers at Queen’s University want to identify important components and features that should be included in a new in-home augmented reality rehabilitation tool for people with a total joint replacement. If you have had a total joint replacement, read more about this study on our website!

Join the Citizen’s panel! The Ontario Drug Policy Research Network (ODPRN) is looking for a few more individuals to join the Citizens’ Panel, with a particular need for those from diverse backgrounds and regions outside of the GTA. If you are interested in becoming a member, please email Dana Shearer for more information. Members will be compensated for their time.

Stay Informed

Join the Citizen’s panel! Don’t understand all of the tests your rheumatologist runs? Look no further than our new “Know your numbers” resource which we co-developed with Dragon Claw.

Redefining Remission: Nathalie’s Story – We’re so proud of CAPA community member, Nathalie Robertson, as she appeared on the Creaky Joints podcast Redefining Remission. Listen to Nathalie as she takes us on her personal journey with RA and shares how she advocates for quality care.

ICYMI: Limited Mobility webinar! Don’t worry if you missed our latest webinar, you can still watch it on our YouTube channel. Dr. Dorothy Riddle, founder of the Hidden Mobility Disabilities Alliance (HMDA) discussed the life of many people that live with the invisible or hidden parts of arthritis and provided tips for navigating daily life.