My speech will be about JIA or known as Juvenile idiopathic arthritis. I have chosen to talk about this because, I want to raise awareness of this awful debilitating disease. JIA has a large impact on the population, around 12000 children in the uk are affected. 1 in every thousand children born in the uk will have to deal with arthritis in their youth. Arthritis is a debilitating disease which has an extremely negative impact on day-to-day life. JIA is a type of arthritis that affects kids and teens, causing swelling, pain and sometimes other problems. For me it is my eyes. I have uveitis ( inflammation of cells in my eyes).
You can see from the diagram the swelling and joint destruction.
This was the start of my journey, joint injections with steroids under anaesthetic closely followed by weekly injection of Methotrexate. Every week the community nursing team would arrive to give me my injections, I hated it, but my mum explained what a miracle cure it was. I was similar to other kids, I was learning ballet, taps and playing. Sadly, every now and again I would get reminders aka flares. My flare in year seven was so bad I had to use a wheelchair for a while. I have been through a number of drugs and currently I am taking a biological drug called Humiera. I still hate taking the injections and the side effects are scary.
One side effect of having JIA Is that it is extremely expensive for medications, for example Humira which is an injection which I take every other week and costs the NHS £1500 per injection. These injections can also make people feel sleepy, feel sick and exhausted. Humira injection, like all medications, has risks like cancer. Can you imagine being told that your little child desperately needs to take medication that could possible give them cancer. What would you do? My mum and Dad had a blond hair, blue eyed little girl, it must have been difficult decision for them.
Throughout my life my parents were reassured that a lot of children will grow out of JIA. sadly, that doesn’t appear to be my prognosis. My future is going to be challenging with joint replacements on the cards, but I will continue to battle on. The charity’s who support children with JIA and their families such as CCCA,and Kids like us have helped me find other children just like me and proven that I can achieve what might seem to be impossible. I will always be grateful to them for the time they have given us and the support they have shown. Kids with JIA are called” Warriors” by their friends and family, I hope you can understand why!
