"I'm not too young for arthritis." Emily wearing an awareness-raising T-shirt from the JAR shop.
“Before I was diagnosed, I did just think arthritis was for the elderly, and that it was just an ache but it’s so much more than that.”
I’m Emily and I’m now 24 years old. I was diagnosed with juvenile arthritis back in 2011 when I was just 13 years old.
When I was 12, I remember waking up one day and I just couldn’t move my legs. I was stuck in bed. At first, my mum thought I was playing around as I disliked school and did anything I could to get out of it, but then she realized I was being serious.
My mum had to carry me back and forth to the doctors for over a year. The doctors kept telling me that it was growing pains or psychological so, in the end, my mum paid privately for me to be seen by a rheumatologist. Within five minutes of seeing me, I was diagnosed with juvenile arthritis. This really shows the importance of raising awareness amongst medical professionals as well as society generally because once I saw the right person, I was able to get a diagnosis quickly but I had been in so much pain and struggling for over a year before that point.
I was put on steroids immediately to help the pain whilst the rheumatologist decided which medication would be best for me. I was put on methotrexate and every joint that was affected got better apart from my neck. Sneezing or driving over speed bumps would put me in agony so my rheumatologist arranged for me to have an MRI scan which revealed my JIA had affected my C1 and C2 vertebrae in my spine.
So I had to go into hospital for this and I ended up having to have a halo traction for five weeks. That meant I had to stay on my back completely for that time. Unfortunately, this didn’t work so they fused my spine and I was in hospital for a further two weeks. It was all so surreal, I even had to learn how to walk again! When I think back to it now, I still can't believe what I went through.
My JIA now is not great. Unfortunately, it now affects almost every joint and I’ve tried every medication that they can offer me. I’m now waiting to start a new biologic medication, so fingers crossed this is the one that will work for me!
It’s certainly been a journey having JIA. I was bullied throughout high school before I was even diagnosed because of the way I walked. I had people mock me and call me names. After everything I went through, I was diagnosed with depression, anxiety, and panic disorder. I take medication for that and I’m in therapy. I also have a great support system which makes a huge difference!
I found that having a diagnosis of JIA wasn’t just about me as it also affected my family and friends emotionally. My family struggled to come to terms with it as I did, but I’m very lucky to have a great family who support me in any way they can. I’ve lost a lot of friends too, as they just couldn’t understand it. It was especially hard for them to understand that I can’t do the things that I used to be able to. But the friends I have now are amazing and understand, and help.
Before I was diagnosed, I did just think arthritis was for the elderly, and that it was just an ache but it’s so much more than that. I’m now so happy that I am able to help raise awareness that JIA is more than just a few aches and that it can affect any age, no matter how young or old you are.
I’ve met and connected with some amazing people that support me and who can also understand my condition as some of them also have arthritis. I’m now also able to appreciate the little things in life. Since being diagnosed with JIA, I’m a much kinder, more positive, and stronger person!
Emily has recently joined us as a volunteer at Juvenile Arthritis Research as an Online Ambassador and Community Champion raising awareness of JIA both online and in her local community. If you would like to volunteer with us, please contact us and ask for an application form.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkjia.org
Emily, aged 13, in the halo traction
Emily's spine had been affected by JIA
Emily is now 24 and is passionate about raising awareness of JIA and making a difference to the lives of others with the condition.