"I never let JIA stop me from doing anything I want to do. I never let JIA define me. If anything, it makes me all the more determined!"
Amber is 12 years old and was diagnosed with Juvenile Idiopathic Arthritis (JIA) when she was 10. Here she shares her JIA story with us to help others know that they aren’t alone and to help raise awareness of the condition.
Although I was diagnosed with JIA when I was 10 years old, my symptoms started almost a year earlier when I was 9 years old. I have JIA in my right ankle and my left knee.
It took almost a year of GP appointments, attending A&E, X-rays and even private physiotherapy for me to eventually be diagnosed. All the medical professionals I saw thought that I had a dance injury.
At the time, I was dancing and competing 6 days a week so had an intensive training schedule. The advice given to me was to rest my ankle as otherwise I would do the ‘dance injury’ even more damage. This was hard because dancing is my life and I hated having to rest, but also because resting it was actually making it feel worse to me (which all makes sense now that I know it is actually arthritis!) We went on a family holiday to Florida for 3 weeks and I really struggled with the amount of walking there. This was around 9 months after my first symptoms, so my family found it hard to believe that it could still be as a result of a dance injury (particularly as I don’t even recall injuring myself).
As soon as we returned from Florida, my dad took me to a different GP and insisted that something further be done. The GP suggested that he would make a referral to Rheumatology (as pretty much everything else had been tried). I remember being frightened because I had no idea what might be wrong. We got an appointment within a few weeks and I was diagnosed with JIA within a matter of minutes of being in the consulting room. This was now almost a year after my symptoms started. I remember the Consultant telling my family that this would have been obvious to anyone who knew anything about JIA. The heat coming from my ankle was intense. He also said that I had JIA in my knee which has never really bothered me. I had to have steroid injections into my knee and ankle as a priority and I chose to have this done using gas and air.
I remember being very scared and really didn’t want to do this but I knew it was necessary to help my ankle. The team at the hospital where I was diagnosed and treated have been fantastic from the very beginning. The nurses worked really hard to help distract me. After the steroid injections into my ankle and knee, I was told what all my treatment options were. I opted for Methotrexate injections which my mum gave me every Wednesday night. It has always been a standing joke in my family that I would never be a nurse or a doctor because I can’t stand injections so this was not an easy decision for me. The consultant suggested that the injection form would be faster working and we had already ‘lost’ almost a year without diagnosis, during which time my joints were becoming damaged. After a lot of discussions with my family and consultant I reluctantly agreed as I knew in the long run it would be the best option.
At first, I dreaded Wednesday nights. However, I very quickly got used to them and I have been lucky and didn’t really experience any side effects other than slight nausea which goes by late Thursday mornings. The difference in my ankle after starting the treatment (the steroid injections and methotrexate) was unreal. I couldn’t believe how much they helped. I was very quickly discharged from physio as the physio said that the amount of dance and training I was doing was already more than what the physio programme would involve. I was very quickly back up to my 6 days of dance and throughout my diagnosis and treatment I never missed a competition. I actually danced at a competition just before diagnosis and we won 1st place (I was so proud that I managed to dance without any showing that there was anything wrong but I was in so much pain afterwards).
After 2 years of being on weekly Methotrexate, my Consultant asked if I wanted to try stopping the medication. This terrified me as I was dancing and performing in competitions and theatre shows and had no pain whatsoever-everything felt completely normal, so stopping taking it made me really worried that I would end up relapsing and having to go through steroid injections again. So over a few months I kept telling the Consultant that I wanted to just stay on it as everything was good. However, I knew that there would come a point where I had to try. So 6 months ago I stopped the medication.
And the good news is that it is so far so good! I make sure that I am always keeping active as that definitely helps me. I will continue to be monitored every 3 months for the time being. I feel like I’ve been very lucky. After I was diagnosed, my treatment plan worked a dream for me and I didn’t experience much in the way of pain or side effects.
One of my other hobbies is competing in pageantry. I’ve been doing this since the age of 5 and have competed nationally and internationally. Pageants are often very misunderstood. They are not simply ‘beauty competitions’. They are focused on community work and charity fundraising. They involve interviews and public speaking. These are all key life skills which have improved my confidence immensely.
I use this platform as a way of raising awareness of JIA with the hope being that children can get diagnosed more quickly and start on treatment quickly. We know that the earlier someone is diagnosed and started on treatment, the better the outcome, so I want to make sure that no-one waits a year like I did to get diagnosed.
Not long after I was diagnosed, I entered a pageant system called “Young European International Miss” competing in England at the start of the year.
I won the preteen category at the European national heat so my national title is “Young European International Pre-Teen”. I will now compete for the international title in Houston, Texas in June which involves a 5 day competition and plenty more raising awareness of JIA and charity fundraising for associated charities! I am so excited that my new European title allows me to raise more awareness of JIA, not just nationally but internationally. I never let JIA stop me from doing anything I want to do. I never let JIA define me. If anything, it makes me all the more determined!
Amber is a member of SNAC (Scottish Network for Arthritis in Children) who support children and families with JIA in Scotland. If you live in Scotland, you can find out more about SNAC here.
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 mental health support and support with injections, please visit our Mental Health hub and speak to your rheumatology team.