This one is personal to me. I have had Juvenile Ideopathic Arthritis (JIA) since I was a kid and one thing I have learned is that there’s a whole lifetime of support required between juvenile-onset arthritis and what the general population consider as living with arthritis in older age.
This piece is adapted from my long-read article ‘10 things that must change to improve the arthritis world‘.
From first-class to economy
As a child, my experience of care from my medical team was incredible. My rare case was of particular interest to the doctors, and they threw the kitchen sink at me, from intense daily hydrotherapy to joint injections and physio. I would be admitted for a few weeks at a time to save my parents the travel but also to be trialled on every treatment and therapy going. Monitored closely for any positive or negative result – and from some of the drugs I was trialled on, there was a lot of adverse effects!
I felt a priority as ‘that kid with arthritis’. However, after several years of remission between the ages of 18-24, I had a different experience when arthritis returned with interest. It took months to get back in with my rheumatologist after check-ups were reduced to yearly when the arthritis was controlled. It took over a year to get hydro and access to basic physio. Access to a specialist physiotherapist took much longer.
It was a horrible and frustrating experience in which during that period, I lost my job, had severe pressures on my financial security and ended up with significant mental health challenges from the stress of it all.
Support juvenile-onset arthritis patients for life
Support for patients with Juvenile-onset arthritis must not end with diagnosis and treatment to the initial remission. The impact to family, career choices, the life of pain and boom and bust lifestyle all need to be considered and supported. Yearly routine check-ups are sufficient until something changes or goes wrong.
There needs to be more done for those with JIA (and other autoimmune diseases) to promptly access support in the initial stages of a flare to minimise physical damage but also disruption to their lifestyle, careers and mental health.
Juvenile Arthritis is a life of riding the swing of a pendulum. From points to where you live a relatively normal, pain-free life to others that are far more disruptive and tortuous than you can imagine. The support needs to be in place to accommodate this swing, regardless of what point you are at in the journey.
Read more about my diagnosis of Juvenile Arthritis and the broader impact it had on my family, education and mental health in this article: The wider impact of Juvenile Arthritis
If you are a child with arthritis or parent/carer of somebody with JiA, I would also highly recommend checking out the resources on the thinkjia.org website.