Donate Now

Edna's Story

I was diagnosed with juvenile arthritis when I was five years old. Arthritis has never been something I developed later in life. It has been part of my life for more than 35 years.

One of my earliest memories is not of playing with friends, but of spending nearly three months in the hospital while doctors searched for answers. Nothing seemed to work, and no one knew why my little body was in so much pain.

I still remember coming home from Grade 1 with empty notebooks because I couldn’t hold a pencil long enough to write. My mother would ask why there was nothing on the page, and I didn’t have the words to explain that my hands simply wouldn’t cooperate. At five years old, my journey with arthritis had already begun.

When doctors finally diagnosed me with juvenile arthritis, life became a routine of medications, blood tests, monthly appointments, and learning to live with uncertainty. I also remember watching my parents do everything they could to make sure I received the treatment I needed. They never told me I had to be strong, but somehow I knew I wanted to be, for them as much as for myself.

Celebrating at the finish line after completing my first 5K race

Finding Hope in the Waiting Room 

As I grew older, arthritis became part of my identity, but it never defined my future. I was fortunate to receive care from the same pediatric rheumatology team for nearly two decades. Looking back, one of my most meaningful memories wasn’t inside the examination room. It was in the waiting room.

As a teenager, parents of newly diagnosed children would often approach me. They had questions about school, friendships, pain, and whether their children would ever have a normal life. Because I lived with juvenile arthritis since childhood without permanent joint damage, they looked at me with hope. I would spend the morning talking with them, sharing my experience, and reassuring them that their children could still dream, study, work, and build fulfilling lives.

I didn’t realize it then, but those conversations were my first experience as an advocate.

Starting Over in Canada

Years later, I immigrated to Canada from Brazil. I built a new life, learned a new language, and established a career in communications and marketing. Then, at 35 years old, my journey with arthritis took an unexpected turn.

During the pandemic, I suddenly experienced severe pain in my hips and lower back. Within days, my knees became swollen, sitting was almost impossible, and I knew something was wrong. Yet, because healthcare was largely virtual at the time, I was repeatedly told it was probably stress.

I knew my body. I knew this wasn’t stress. After months of advocating for myself, I was finally referred to a rheumatologist. One of the hardest moments of my journey happened during that appointment. Because my medical history was in Portuguese and I struggled to remember the names of medications I had taken decades earlier, my diagnosis was questioned.

Imagine living with arthritis your entire life and then feeling that you have to prove it. An MRI confirmed what I already knew. In January 2021, I was diagnosed with ankylosing spondylitis.

I remember leaving the appointment and calling my mother. She was the only person who truly understood what that diagnosis meant because we had already walked this road together once before. This time, however, I wasn’t a frightened five-year-old. I was an adult living in a new country, carrying decades of experience, resilience, and perspective.

Strength and mobility training is an essential part of my routine to build resilience, prevent injuries, and support my long-term health.

Where Research and Lived Experience Meet

Today, arthritis continues to influence my life, but it has also given me a purpose. Professionally, I work in communications and marketing, helping organizations transform complex information into stories that educate, connect, and inspire action. Personally, I have spent more than three decades living with arthritis.

Those two worlds naturally came together. I believe research has its greatest impact when it is informed by the voices of the people it is meant to serve. Scientific discoveries improve lives, but stories help people understand why those discoveries matter.

One of the biggest misconceptions about arthritis is that it only affects older adults. My life tells a different story. Arthritis shaped my childhood, my education, my relationships, my career, my immigration journey, and the person I have become.

Most importantly, it taught me something I now want others to know: we are not alone.

Preparing for an open water swim with my Lake Ontario Swim Team

Arthritis is an invisible disease, but its impact reaches far beyond the person living with it. It affects families, friendships, careers, and dreams. Yet it also reveals extraordinary resilience, compassion, and hope.

If sharing my story helps one child feel understood, one parent feel hopeful, one healthcare professional listen a little more closely, or one researcher better understand the patient experience, then every part of this journey has had a purpose.

The opinions expressed in this piece are not those of Arthritis Research Canada. 

If you have questions about your medications and treatment plans, please consult your family doctor or rheumatologist.

Donate now to give the gift of life-changing arthritis research.

Donate Today

Subscribe to our newsletter​

Newsletter Component #1

Name(Required)