When someone mentions Arthritis, most people think of old people with stiff and sore joints and they don’t realise that children can get it too. Juvenile Idiopathic Arthritis is a chronic auto immune disease that affects the joints, eyes and organs in children.
My life with JIA began when I was 3 years old. My left knee got incredibly sore, stiff, red and very swollen. I am now 16 years old and it has spread to nearly every joint in my body, my knees and ankles are the worst. I take lots of medication every day which helps to keep me mobile. I also take injections weekly. I have a physio programme which I do every morning to loosen out my joints when I’m stiff. I have to use a laptop in school because I can’t write much as the pain in my wrists gets too bad after a few sentences. I have to use my wheelchair and crutches a lot when I am having a flare which really upsets me.
JIA has had a huge impact on my life. I had to give up playing camogie because I couldn’t keep up with the rest of my team, I have to miss out on a lot of things in school , days out with my friends and when I am having a bad day I can’t do simple things like brushing my teeth and getting dressed. If I go shopping or on a day out I have to bring my wheelchair because I know I won’t be able to walk for the whole day, my knees and ankles will simply give in with fatigue and pain. I always have to plan ahead. I have learned over the years what my limits are, and what I can and can’t do. I have lots of bad days which make me angry and sad, but I also have good days too so I have to focus on those.
JIA isn’t just a problem with the joints it’s the chronic fatigue, the struggle to walk and get out of bed in the mornings, the tears, the anger when you can’t do simple things, the “you’re too young for arthritis, the “but you don’t look sick”, the medication, weekly injections, side effects, scans, blood tests, hospital treatments, joint injections, and of course the indescribable pain.
For the past 2 years I have been involved with ICAN The Irish Children’s Arthritis Network, they provide support for other children, teens and families of children with JIA in Ireland. I have received great support from everyone there. I have made lots of friends who go through the same thing as I do and know exactly what it is like to live with JIA and face the challenges I face everyday. I now know that I am not alone, and that there is support out there. I want other people to know about JIA, because one day JIA could enter your lives.
Niamh Costello, 16
*The opinions expressed are the bloggers own and do not necessarily reflect the views of the World Health Innovation Summit.
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