Maisie

"Without this condition I wouldn’t be the person that I am today."

Hi, I’m Maisie. I’m 16 years old and currently in my last year of secondary school. I was diagnosed with polyarticular Juvenile Idiopathic Arthritis at the age of 4, just before starting primary school. Thankfully, for now I am in medicated remission. I only flared when my medication was paused to check if I would stay in remission without it but sadly I didn’t. 

I have been under the care of Alder Hey Children’s Hospital in Liverpool for over 11 years now and me and my family are extremely lucky to have such a caring rheumatology team who are always responsive to my flare ups. 

"I have never let this condition stop me and have always refused to let JIA define me."

Being told I have an incurable autoimmune disease at such a young age was never going to be easy. I didn’t fully understand it then, but my parents did. Even so, I’ve never made a big fuss over my condition - I just got on with things, even when it affected my ability to do simple everyday tasks. However, I have never let this condition stop me and have always refused to let JIA define me. All I ever wanted was to live like any other child. I have done anything and everything I’ve ever wanted to and unless you knew my history you would never guess I even had JIA. 

I have danced for the majority of my life and now dance up to 4 times a week, performing in many shows and earning trophies from exams. Dance has always been something I loved and something that helped me through the hardest times, so I never let arthritis take that away from me.

Over time, I developed JIA in both knees and both ankles. I still remember the early days of my childhood where my parents would have to carry me to the toilet in the morning as I was unable to walk there myself. At school, I had to sit on a chair whilst all the other children were sat cross-legged on the floor. I hopped and limped everywhere and sometimes walked like a penguin to try and reduce the pain. 

When I was younger, I was shy. I wouldn’t tell anyone when something hurt - not even the doctor as I tried to act as if everything was okay. I’ve had multiple steroid treatments, and procedures under anaesthetic to drain fluid from my joints. For years I took oral tablets of methotrexate, an immunosuppressant, but for me the sides effects were horrible and made me sick nearly every time. Switching to injections of methotrexate helped, but eventually caused issues with my liver. That’s when I was offered a biologic medication, adalimumab. This was also in injection form. Despite dreading having these injections, it’s something I’ve become used to. Overall, they help amazingly allowing me to live my life to the fullest. 

Nearly a year ago, I built up the courage and learnt to self-inject and still do this now every 2 weeks, along with a low dose of methotrexate once a week.

"Living with JIA has been the hardest thing I’ve ever faced."

Living with JIA has been the hardest thing I’ve ever faced. It’s so much more than just painful and swollen joints - it’s the regular hospital appointments, blood tests, ultrasounds, physiotherapy and all the things that have to happen behind the scenes to enable me to live as normal a life as possible. Because JIA is an invisible illness, it can be an isolating disease. Not many people have it and not very many understand. That’s why the awareness raised by Juvenile Arthritis Research is so important.

A few months ago, I received a Little Box of Hope from Juvenile Arthritis Research which was so lovely. It made me feel less alone and genuinely brightened my day.

For as long as I can remember, every single wish I’ve made has been for my arthritis to go away, knowing full well that wasn’t going happen. But I’ll continue to wish and with all the advances in research, maybe one day it will go into permanent remission. The common thread I have noticed throughout the years is that of perseverance, patience and hope. Qualities that I believe I have developed due to my experience of living with JIA. Without this condition I wouldn’t be the person that I am today.

Maisie's story has also been featured in the Lancaster Guardian.

If you would like to share your JIA story, please get in touch.

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 at school, please visit our Parent Zone. Schools and universities can request an information toolkit to support children and young people with JIA in their setting at www.jarproject.org/schools 

Many of the resources we have developed can support children and young people at school and with explaining their condition to others such as our "I have JIA" cards. You can access these here.

For support with Mental health, please see our Mental health and wellbeing page here.  

You can also help us be there to make life better for children and families affected by JIA by supporting our work at www.jarproject.org/fundraising