Celebrating JRA Unicorns
Juvenile rheumatoid arthritis (JRA), now called juvenile idiopathic arthritis (JIA), impacts an estimated 300,000 children in the U.S. (about 1 in every 1,000).1
While a challenging diagnosis, newer treatments in the past few decades have thankfully helped with moderating the disease, hopefully preventing permanent damage and lessening disability in many children.
The impact of JRA on my early life
I was diagnosed at age 2 in 1979, a few decades before the best effective treatments currently available were approved. Since my disease was super aggressive, I experienced a lot of joint damage and pain early in life. Not long after learning to walk, my gait was impacted by inflamed joints. Around age 10 I started using a manual wheelchair, then in my later teens a motorized wheelchair.
Only as an adult did I find medications that helped to calm my disease. But it was really too late to prevent significant harm and permanent disabilities that altered my life trajectory. My doctors over the years have also observed the disease impacted my development and stunted my growth, resulting in things like smaller hands, feet, and shoulders.
I think of us as JRA Unicorns
Growing up with JRA, I had to learn to cope with my disease while also adapting to my disabilities. As an adult, I work to manage my condition (as a result of the many decades of damage) while also living a productive life.
In recent years, I have sought out others like me — adults with JRA who were diagnosed before the effective treatments and had to cope and adapt as best we could. I think of our group as JRA Unicorns because we are small in number but have unique stories.
How many adults with JRA are out there?
Try as I might, I couldn’t find an estimate for the number of adults with JRA. Since a good portion of children diagnosed with the disease may "grow out of it" without explanation (resulting in hopefully less permanent damage and recovering enough to experience a mostly unaltered life while losing the official diagnosis label), there may not be an accurate number.
Additionally, many children diagnosed with JRA receive a different diagnosis in adulthood, which makes it harder to track the number of adult cases. Some researchers argue that JRA/JIA is its own distinct disease and needs to be recognized and treated as such, not merely re-labeled rheumatoid arthritis in adult patients.2
I personally agree with this assessment, as the combination of child development with JRA and having the disease for many years (inevitable if diagnosed as a child) has resulted in different complications and a greater level of damage than usually observed in adult onset RA cases.
Hope for future generations
Diagnosis with JRA is still a difficult road to navigate, even with the better treatments available. Children diagnosed now still experience pain, joint damage, the side effects of treatments, and the challenges of growing up as sick kids.2
It’s definitely not easy. My only comfort is that I hope many diagnosed today experience less damage and disability than I did as a child and grow up to have less medicalized lives.
My cohort (or other JRA adults near my age) didn’t have the advantage of modern treatments, so we are a unique bunch. I recognize our round faces, small joints, and determination whenever I meet another. Each of us has a unique story: different surgeries, different complications, and different adaptations to life.
But there’s also so much underlying similarity. In most of our cases we were alone and didn’t know others with the condition. We had to find our own treatments, solutions for problems, and ways of coping. We had a common experience of a body under serious attack from inflammation and not finding a way to stop it from happening. While the specific joints most affected may be different, the overall impact was the same. We had to learn to adapt to damage and disability and live on as best we could.
We may be few, but we are strong
While I truly hope the future of JRA children diagnosed in recent years will be different, I want to recognize the JRA Unicorns who are now adults. Their experiences in perseverance can help guide us all when we are struggling with answers and adapting to difficult conditions. There may be few of us JRA Unicorns, but our spirits are strong, and our will to thrive as best we can continues well into adulthood.
A few years ago, I tried to connect with others like me through a large national organization and didn’t have any luck. I was happy that this organization now had places for JRA children to connect and find support (something not available when and where I grew up), but the adult unicorns are still mostly on our own.
When we find each other and share our stories, we feel such a strong shared connection and support. Because there aren’t many of us, it is a unique pleasure to find others who have lived a similar rare experience and can really understand the heart of the ongoing adult JRA struggle.
Celebrating all the JRA Unicorns out there
So today, I celebrate those adult JRA Unicorns out there. My heart is always open to connect with this special group of people who have fought the long war and still tell their tales of struggle and persistence.
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