Edna Gelinski

More Than 35 Years With Arthritis, and Still Moving

I was diagnosed with juvenile arthritis when I was five years old. Since then, arthritis has followed me through childhood, school, adulthood, immigration, and the process of building a new life in Canada.

But there is another important part of my story: after living with juvenile arthritis for more than 35 years, I have no permanent joint damage from the disease.

I do not take that for granted.

The Care That Helped Shape My Future

Some of my earliest memories involve pain, hospital stays, blood tests, medications, and appointments. I remember coming home from Grade 1 with empty notebooks because my hands hurt too much to hold a pencil.

At that age, I could not understand what was happening to my body. My parents carried that responsibility for me. They searched for answers, took me to appointments, followed treatment plans, and made sure I received the care I needed.

Once I was diagnosed, I was supported by the same pediatric rheumatology team in Brazil for nearly two decades. That continuity of care made an enormous difference. My healthcare team knew my medical history, followed the progression of my disease, adjusted my treatment, and helped my family understand how to manage a chronic condition.

Treatment was not always easy, and living with arthritis still meant pain, uncertainty, and limitations. However, consistent medical care helped protect my joints and preserve my mobility. Today, being able to say that juvenile arthritis did not leave me with permanent joint damage feels extraordinary.

It is evidence of what healthcare, treatment, research, and a committed care team can make possible.

Learning to Advocate for Myself

Years later, I immigrated to Canada and began rebuilding my life in a new country. At 35, during the pandemic, I developed severe pain in my hips and lower back. My knees became swollen, and sitting was almost impossible.

At first, I was told that my symptoms might be caused by stress. My medical history was in Portuguese, and I could not remember the names of medications I had taken decades earlier. For the first time, I felt as though I had to prove an illness I had lived with almost my entire life.

That experience taught me that receiving care sometimes requires persistence. I continued advocating for myself because I knew my body and knew something had changed.

Eventually, I was referred to a rheumatologist. An MRI provided the answers we needed, and in January 2021, I was diagnosed with ankylosing spondylitis.

Although the path to that diagnosis was difficult, the Canadian healthcare system ultimately connected me with specialist care, diagnostic imaging, and treatment. These resources allowed me to begin managing a new chapter of my arthritis journey.

My experience has taught me that healthcare support is not only about appointments and prescriptions. It is also about being heard, having access to the right specialists, receiving an accurate diagnosis, and benefiting from treatments developed through years of scientific research.

Movement Means Something Different to Me

Today, movement is an important part of how I care for myself. I swim, walk, run, cycle, and include strength and mobility training in my routine.

I have completed a 5K & 10K races (and working to run 15K) and participated in open-water swimming. These activities may look like fitness goals from the outside, but to me, they represent much more.

Every step, stroke, and training session reminds me of what my body has overcome. Movement is not always easy or predictable when you live with arthritis. Some days require adjustment, patience, or rest. But every time I am able to move, I think about the five-year-old girl who could not hold a pencil and the medical care that helped protect her future.

That is why I am participating in MOVE with Arthritis Research.

From September 16 to 30, I am committing to moving for 30 minutes a day in support of life-changing arthritis research. The challenge can be adapted to every person’s abilities because movement with arthritis looks different for everyone. What matters is that every move counts.

Why I Am Fundraising

Research has already changed my life.

The medical knowledge, treatments, diagnostic tools, and models of care available to patients today exist because researchers continued asking questions and people chose to support their work.

I am fundraising because I want more children with juvenile arthritis to grow up without permanent joint damage. I want parents sitting in hospital waiting rooms to have hope. I want people whose symptoms are invisible to be heard and believed. I want newcomers navigating healthcare in a new language to receive compassionate, informed care. And I want everyone living with arthritis to have the opportunity to keep moving toward the life they imagine for themselves.

My healthcare journey has not been perfect, but it has shown me what becomes possible when patients, families, healthcare professionals, and researchers work together.

After more than 35 years with arthritis, I am still moving. I am moving because I can, because others helped make it possible, and because research can help make that future possible for someone else.

Please consider supporting my MOVE with Arthritis Research fundraiser. Every donation helps advance patient-centred research and brings us closer to better care, better treatments, and better lives for people living with arthritis.