“I am very adventurous and I don’t let anything stop me from doing what I want to do the majority of the time.”
Ethan shares his story:
Hello my name is Ethan and I am 7 years old. I was diagnosed with Polyarticular Juvenile Idiopathic Arthritis (JIA) when I was 1 year old. I had a swollen knee and my mum knew something wasn’t right and kept taking me to the doctor. I was then admitted to our local hospital. They still didn’t know what was wrong with me so I was referred to Bristol children's hospital where I was officially diagnosed with JIA and uveitis.
I had steroid injections into my joints. I’ve had this done a few times now.
I was then put on methotrexate. After continuing flare-ups, I was then put on Humira two years after starting methotrexate. It was up and down with my arthritis. In 2020, I had a really bad flare-up where I was admitted to hospital. I had to have an MRI which meant having to lie still for 45 minutes whilst holding my mum’s hand. During this flare, I struggled to eat food, and I lost weight. My methotrexate dose was increased. Then in 2021, I had another flare-up and this time my uveitis became active so I had to have steroid eye drops. And I didn’t like them at all. But my mummy said I was the bravest boy in the world. We finally managed to go into remission, until this year, I had another flare-up, in both my joints and eyes. I was again put on steroid drops, and my methotrexate was upped again, and I was put on oral steroids to take at home for 8 weeks. They made me gain weight. I couldn’t sleep and had horrible mood swings, but they did help my joints. And we did lots of fun things as a family in that time also to balance out the extra appointments I was having.
I don’t like having my Humira injection. I’d been having it at home for 5 years. But now I have lots of fun with a play therapist at the hospital to have my Humira. I do miss school sometimes for going to the hospital for my eye appointments, and to see my doctors. And I do miss out on parties and play dates when I’m hurting. But my mummy makes it fun for me and we do things together to make me feel better. I have a happy box that has things that make me happy, and lovely notes that people have written about me for days that I feel sad. But overall, I am very adventurous and I don’t let anything stop me from doing what I want to do the majority of the time.
I was sent a Little Box of Hope from Juvenile Arthritis Research and I absolutely love it. We read the Kipo book all the time, and it’s nice to know I’m not alone.
“The setbacks as a parent can make it feel like the weight of the world is on your shoulders and to watch your child struggle is really tough.”
Ethan's mum, Jade, shares:
Ethan wanted to help to write this story as it is about him. I am a very proud mum of an arthritis warrior. The setbacks as a parent can make it feel like the weight of the world is on your shoulders and to watch your child struggle is really tough. We’ve had a rollercoaster ride with this journey. But we have been greatly supported by our friends and family and we wanted to share our story because we want other parents and children to know they’re not alone. There are good days, even when it doesn’t feel like it. Ethan has anxiety around his medications and that’s okay, it’s a lot for a child of his age, but we overcome the challenges together.
We always strive to raise as much awareness of JIA to help educate people about it. We have experienced comments from people saying that they didn’t know children could have arthritis, or that he’ll grow out of it. If you have experienced this too, you’re not alone. I understand that JIA is a diagnosis for life but I also know that it’s important to focus on the now, rather than getting my hopes up about the future or worrying too much about the future.
From my experience as a parent with JIA, the journey is a rough, emotional rollercoaster. And if you need support for your own mental health as a parent, please ask for it. I hope our story can help others and give some comfort that although you won’t always get what you want from this journey, you’re not alone. After Ethan’s flare-up a few months ago, he’s gone into remission. We all have our fingers crossed it’ll last longer than the last time. But we live in the moment and take things as they come.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkjia.org
For support with mental health and wellbeing, please visit our mental health hub.
Our 'Brain in my hand' webinar supporting parents/carers as they support their children with JIA can be found here.
You can find out more about Juvenile Idiopathic Arthritis here.