All posts related to "advocacy"

#CRArthritis Speaker’s Corner – Interviews on patient advocacy

Each of us has the power to change arthritis—together, we can change the way arthritis is perceived by the public, portrayed in the media, and understood by government. As people with arthritis, and their family members and friends, the arthritis community is in a unique position to provide media, government, and healthcare decision-makers with the real story of arthritis.

But none of us can do this alone. One or two voices may be easy to ignore, but speaking together we are powerful. The voice of arthritis—the voices of all of the people who live with the disease, or care about someone who does—is strong and getting stronger every day.

Please take the time to view the interviews below on patient advocacy and learn what passionate people and patient organizations are doing to promote arthritis awareness. Learn the facts about arthritis, and about the discrimination that people with arthritis face every day. Think about your own story, or the story of someone you love. When you’re ready, join with us and take action.

Challenge the misperceptions. Speak up. Tell your story. Change arthritis.

The interviews below are conducted as part of the “CRA Interview Series 2017 – Facebook Live #CRArthritis Speaker’s Corner” event at the CRA Annual Scientific Meeting & AHPA Annual Meeting in Ottawa earlier this month.  Continue reading

Happy Holidays from ACE!

ACE Holiday Slide Image

2015 was a year full of challenge, empowerment and change, and Arthritis Consumer Experts was by your side through it all, delivering the consumer-patient voice and fighting for the rights of Canadians with all forms of arthritis.

For me, 2015 also marked the point in time when I have now lived more than half my life with rheumatoid arthritis. Where did the time go? It seems like yesterday I sat across the desk of a rheumatologist and heard them say to me, “you have rheumatoid arthritis”.

In my “half-life” with rheumatoid arthritis, I, like hundreds of thousands across Canada, have seen life changing scientific advances in medication and non-medication therapies. New medicines, like biologics and targeted small molecules have literally saved people’s lives and are now commonly used words and terms in an ever expanding arthritis consumer (patient) “dictionary”. Blood tests such as JOINTstat™ are being used to strengthen a rheumatoid arthritis diagnosis and possibly predict disease severity. Research into exercise has proved that even people with severe rheumatoid arthritis should find ways to exercise safely in order to improve or maintain joint function and maintain cardiovascular and general health. And most recently, evidence that begins to suggest people with rheumatoid arthritis’ life expectancy is moving closer to that of the general population, possibly as a result of the treatment paradigm shift from “wait and watch” to “earlier and aggressive”. These types of advances have also occurred in the other common inflammatory diseases, ankylosing spondylitis and psoriatic arthritis. Continue reading

Occupation and the Artist: Sculpting the Illness Experience

ICover for Sculpting the Illness Experiencen their Fall issue, The Open Journal of Occupational Therapy featured an article titled “Occupation and the Artist: Sculpting the Illness Experience” on a person that is a favourite in the arthritis and art community – Otto Kamensek. In the article, Otto shares what his exhibit “Glimmer of Hope” means to him.

“Glimmer of Hope” is a visual journal of the pain Otto has experienced throughout his life with Juvenile Rheumatoid Arthritis (JRA). It illustrates the changes and sensations that have occurred in his body. Throughout his work, he uses symbolism to represent the types of pain he experiences and where it occurs in his joints. Lightning bolts represent flashes of pain, needles represent sharp pain, melted down nails represent festering pain, and elongated pyramids represent monumental pain. His sculpture also depicts scars from hip and knee replacements, muscle wasting, and physical changes in the feet and hands.

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ACE Advocacy in Action

Kelly advocacy presentation

ACE Advocacy in Action

At the recent Canadian Rheumatology Association and Arthritis Health Professions Association annual conferences held at Whistler, B.C., Kelly Lendvoy, Vice President, Communications and Public Affairs and Cheryl Koehn, President, Arthritis Consumer Experts, conducted workshop presentations on “Advocacy”.

ACE (Arthritis Consumer Experts) shared its Advocacy Cycle model and provided case studies of national and provincial campaigns it has recently conducted.

If you want to learn more about or become part of ACE Advocacy in Action, please contact Kelly at lendvoy@jointhealth.org.