We are pleased that our Parent and Patient representatives’ group, the CLUSTER Consortium Champions, has welcomed a new member this summer. Debbie, who works at the JIA-at-NRAS (National Rheumatoid Arthritis Society) charity, will bring another voice to CLUSTER and help widen our Patient and Parent Network (PPN) even further.
Debbie has openly spoken to us about her personal experience with JIA, her motivations for joining CLUSTER and how she has settled into the Consortium so far. Continue reading below to hear her story.
I cannot remember a time when JIA was not a part of my life. I was only eight years old when I was diagnosed, however it took many years to get a diagnosis. My wrists were affected first, and I had to give up my dream of becoming a gymnast. Throughout the rest of my childhood many more joints were affected, both knees, hips, jaw and ankles. The only treatment I was given was steroids which for a teenage girl is never a good thing. My weight fluctuated and the moon face was very apparent, not the most flattering look. I had many weeks and days of being unable to walk and I had to learn to write with both hands. Looking back, it has given me resilience in life and learn to adapt when needed. This was so important when in 2016 I was diagnosed with sclerites (inflammation on the white of the eye) due to having JIA. It was a shock as I was never told it could affect your eyes. This was at a time when my whole body was flaring and then for the first time ever, I was put on long-term treatment. Thankfully biologics have saved my eyesight and further damage to my joints. My resilience was also put to test when a few years later my eldest daughter got diagnosed with JIA. I remember that day so well, my heart broke. I did not want her to go through what I did. The multidisciplinary team now in place for children diagnosed with JIA have been great and her condition is now being well managed. It has taken a few years to get there, and we have learned not to take for granted the good days in life.
I have seen first-hand how treatment for JIA has changed throughout the years and now children being diagnosed have a much chance of a better outcome than I ever had. However, there is still much more research to do. The immune system is so complex and we need to understand it more to find out why children react differently to treatments. When I found CLUSTER I really wanted to be able to add my voice; not only my personal experience of living with JIA, a parent of a child with it, but being able to represent the children and families of those from my work at JIA-at-NRAS.
Even though I have only been a part of CLUSTER for a few months, I can see the commitment and determination in delivering on their aims. The quality and quantity of ongoing research and future research is very reassuring knowing that no child should have to go through the childhood I had because of this disease. I feel very proud to be part of CLUSTER and knowing even if it is a small amount of difference to helping the future research into a disease that I have had nearly all my life.
JIA-at-NRAS is a part of the National Rheumatoid Arthritis Society (NRAS). They provide information and support services for those affected by juvenile idiopathic arthritis (JIA), their families, friends, and careers. To find out more about their work or to seek support, please go to: https://jia.org.uk/
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