About Me: My Journey as an Arthritis Advocate
Living with rheumatoid arthritis (RA) for over 30 years has been one of the most challenging yet transformative experiences of my life. From my early days of being diagnosed to navigating treatments, family life, and advocacy, I’ve learned firsthand what it means to live with a chronic illness. But it hasn’t been a journey I’ve walked alone—my mission is to help others find hope, empowerment, and community.
Early Diagnosis and Discovering My Passion for Advocacy
I was diagnosed with severe rheumatoid arthritis when I was in my early 30s. At that point, I had already felt the weight of the disease on my body, my family, and my life. It was a life-altering moment, one that could have knocked me down for good. But instead, it became the driving force behind my lifelong passion to help others who, like me, needed support, information, and hope.
What started as a personal journey of managing my own arthritis soon evolved into something much larger. I began seeking ways to give back and became involved in advocacy, working to raise awareness, educate others, and support arthritis research. I wanted to ensure that no one else would ever feel alone on this difficult journey.
My Advocacy Timeline
Arthritis Society MB Division: Arthritis Self-Management Program Leader (1995-1997)
I started my formal journey as a program leader, helping others learn how to manage their arthritis through education and support. These sessions empowered people to take control of their health and live fuller lives despite the challenges arthritis brings.
MB Division Advocacy Committee Member (2001-2006)
As a committee member, I actively engaged in advocacy efforts to improve the quality of life for those living with arthritis. We worked tirelessly to push for better healthcare access, awareness, and policy changes, and being part of this initiative solidified my commitment to speaking up for those affected by arthritis.
Indigenous Peoples with Arthritis Working Group (2005-2006)
Being of Indigenous heritage, I knew there was a gap in support and information for Indigenous communities. I helped organize workshops at the FND office in Winnipeg, where we focused on providing arthritis education and resources specifically tailored for Indigenous Peoples. I’m proud of the work we accomplished, ensuring that these communities had access to the care and support they needed.
Fundraising and Community Efforts
Joints in Motion
Fundraising became a huge part of my advocacy work. I joined Joints in Motion, leading efforts to raise over $10,000 alongside my family, in collaboration with Safeway and Patient Partners in Arthritis. One of the highlights was participating in a run in Belgium—a physical and emotional challenge that allowed me to contribute in a meaningful way while pushing myself beyond my arthritis.
Patient Partners in Arthritis MB/Sask (1997-2008)
Through Patient Partners, I had the privilege of demonstrating musculoskeletal (MSK) exams to healthcare professionals across Manitoba and Saskatchewan. This wasn’t just about showing techniques—it was about ensuring that future medical professionals truly understood the realities of arthritis and could offer the best care to their patients.
I also led initiatives such as “Getting a Grip on Arthritis” (2005-2006) and Quick MSK Examination training, and I conducted community health workshops that reached even more people. It was an incredibly rewarding time, knowing that my work was contributing to the education of both professionals and the public.
National Representation and Expanding My Impact
Consumer Advisory Council of The Canadian Arthritis Network: Indigenous Consumer Representative (2004-2008)
Serving as the first Indigenous consumer representative in Canada was an honor. My role allowed me to collaborate with top researchers and advocate for arthritis patients, particularly those from Indigenous communities. I worked on the Partnership and Sustainability committees, focusing on long-term arthritis research and advocacy efforts. Being a voice for Indigenous arthritis patients at a national level was deeply meaningful to me.
Conference Speaker (2006, 2007)
As my role in advocacy grew, I had the opportunity to speak at several national conferences, including the CAN Conference and Residents Weekend in Montreal. Sharing my personal journey with arthritis while advocating for research and patient-centered care on such a platform was both empowering and humbling.
Media Engagement and Amplifying My Story
Media Campaign (2009)
One of the most surreal moments of my advocacy career was being part of a major media campaign at Health Science Center Winnipeg. Sharing my arthritis story across radio, TV, and newspapers gave me the chance to reach even more people. Walking into the hospital and seeing a life-size picture of myself on the main elevator door was an experience I’ll never forget! The pamphlets with my story that were distributed throughout the hospital provided comfort and information to countless patients—my story became a beacon of hope for many.
Today: Continuing the Advocacy Online
My advocacy journey isn’t over—it’s evolving. Today, I’m using social media and blogging platforms to reach even more people. Through Facebook, TikTok, and X (formerly Twitter), I share insights, resources, and updates about arthritis and chronic illness.
In addition, I’ve started two blogs: one dedicated to rheumatoid arthritis and one focusing on my life story. You can read more about my personal journey growing up in foster care and discovering my Indigenous roots here, or explore my arthritis blog for advice, research updates, and personal reflections on managing RA for over 30 years.