Since my flare-up I haven’t been able to exercise at all and I’m finding it quite difficult, outlines Jasmine Leslie
I’m 16 years old and live in Cornwall with my family. I’m in sixth form studying A-levels in physics, biology and maths, and hope to pursue a degree in medical physics.
My diagnosis of juvenile idiopathic arthritis (JIA) was quite quick although I know for other people it can take a long time. My dance teacher noticed my knee was swollen and we went to the doctor.
We thought it was just one of my knees, and then they realised that my toe, which had been hurting for a long time, had arthritis as well. My toe is now permanently damaged and the arthritis has spread to most of my joints.
When I was in primary school I developed uveitis, the eye condition associated with JIA, which doctors were successfully able to control with methotrexate. But the drug made me nauseous and so this drug was stopped. Following a stable period when my inflammation reduced, my inflammation was controlled by six-monthly steroid injections. But my symptoms flared around 18 months ago.
The aggressive return of JIA symptoms has had a large effect on my life.
I had been doing many sports, including swimming at county level. Since my flare-up I haven’t been able to exercise at all and I’m finding it quite difficult.
It’s had a massive impact on my life because I haven’t been able to do the things that I want to do or go out with my friends a lot.
It was really hard when I was doing my GCSEs. Being so tired and having so many hospital appointments, added to the side effects of the medication, meant I wasn’t able to revise as much as I would have liked to.
Then I developed arthritis in my hands a few months before my exams so I couldn’t write without pain and had to learn how to do it all on a computer. It was a very stressful time.
I find that lack of awareness among my peers can be challenging. A lot of people don’t understand that arthritis affects children as well as adults and don’t recognise its impact as it’s an invisible illness.
I love drama and played Frenchy in the school production of Grease. I did every night of show week but felt so tired and in pain and I’m sure people thought I was faking it.
It’s the same with public transport. It’s difficult to ask someone, “can I sit down please?” especially if they’re older.
I have trialled many different treatment options including biologics, which have not been successful, and it has been mentally draining and difficult. I am currently taking part in a clinical trial (CLUSTER) in the hope a new drug may suit me.
I’m doing my Extended Project Qualification at school on personalised medicine, which is what CLUSTER is all about. Trial and error will hopefully become a thing of the past. If I’d been on a targeted treatment from the beginning, I wouldn’t have had to spend so much of my teenage years struggling with this condition.
For more information on CLUSTER visit www.clusterconsortium.org.uk
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