It doesn't only happen to older people: my life with juvenile arthritis
This week is Bone and Joint week, which raises awareness for the importance of musculoskeletal health. 17.9% (gov uk, 2024) of the UK population is affected by long term musculoskeletal problems. It's important to share different experiences with bone and joint problems as everyone's experiences are unique.
Growing up with JIA
I live with Polyarticular Juvenile Arthritis (JIA). I was diagnosed with JIA at around 16 months old. I grew up with constant joint pain and had flares fairly frequently.
Developing JIA when I was so young meant that the active arthritis inflammation could erode my bones away much more quickly. This is because bones in young children are softer and more like cartilage so can erode faster and more easily.
Discovering the damage
At 15 years old, I found out my right foot and ankle had been severely damaged by my arthritis. This meant my bones were severely eroded. I had a bone missing due to it wearing away as a young child and there was no cartilage in between my bones to cushion them.
I was unaware of this until I was 15 due to the fact my rheumatologists only looked for active inflammation when looking at my scans rather than damage. An orthopaedic surgeon then found extensive damage in my foot and ankle.
Surgery and a life-changing decision
At 17 years old, I had an ankle fusion in an attempt to help my severe pain from my arthritis damage. Unfortunately, this did not work for me as there were too many problems in my foot that a simple ankle fusion could not fix.
A few other options were discussed, such as a full foot fusion and an ankle replacement, but neither would give me any more functionality or any less pain.
An amputation was then discussed between many surgeons and medical professionals as it felt very radical due to me being so young. I was referred to a plastic surgeon who did a Targeted Muscle Reinnervation (TMR). Due to having pain for such a long time, a TMR gave me a better chance at recovery as it is known to reduce phantom limb pain and residual limb pain.
Having then gone ahead with it, this has massively helped my pain and my quality of life.
Breaking the stereotypes
My experience with arthritis and musculoskeletal problems has been very unique to what I see mostly in the media. Everyone has a different experience and breaking down stereotypes of "this only happens to old people" and "bone and joint diseases aren't serious" is so important as more awareness needs to be brought to a range of different experiences.
More is shared about musculoskeletal conditions being developed with age, despite 2% of UK children and young people being diagnosed with a musculoskeletal condition. This equates to roughly 600,000 children and young people (Arthritis UK).
600,000 children and young people in the UK live with a musculoskeletal condition |
For many young people, it can feel very lonely to be diagnosed with a long term condition, especially when none of your peers understand your condition or only know of it.
This is why sharing different perspectives can help normalise the fact that children and young people can also live with musculoskeletal conditions. Increased visibility of seeing children and young people living with these conditions can help make others feel less alone and validated in their experience.
If this sounds familiar
If you’re a young person living with a bone or joint condition, you’re not alone, even when it feels that way. Your experience is valid, however different it looks from what you see in the media.
This Bone and Joint Week, I’d love you to share this post or your own story. The more of our experiences people see, the less lonely it becomes for the next person.
Where to find support
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