Heather

"University is hard especially when you have to balance JIA alongside it, but with accommodations and support I am determined to complete my degree."

Hi, I’m Heather, I am currently 19 years old and I was diagnosed with JIA when I was 17. It was a 10 year journey to diagnosis with many difficulties along the way.

 It all started when I was around 7 years old. I experienced pain and swelling in my right knee that left me unable to straighten my leg. At the time I competed in multiple sports (cross country, sprint, gymnastics) which meant that we originally assumed it was a sporting injury. We went to the GP who requested blood tests which showed high levels of inflammation and ANA. Despite this, we were told it was just growing pains and to ignore it.

 The pain didn’t go away and instead spread to my other leg, ankles, feet and hips. It meant that I had to gradually give up the sports I loved and most of my hobbies as I was unable to run, jump and struggled to walk long distances. The GP kept telling us it was just growing pains and I that I would grow out of it one day.

 By the time I was doing my GCSE’s at the end of high school, my hands and arms had started to be affected and it left me struggling to write. By this point we demanded that our GP refer us to rheumatology because we knew something wasn’t right.

 When we first met with the rheumatologist our concerns were ignored and he blamed all my symptoms on tight hamstrings. We now know the symptoms were caused by the JIA. He referred me to physiotherapy and discharged me. It took two additional referrals by the physiotherapist referring us back to the rheumatologist for me to finally be diagnosed with Polyarticular juvenile idiopathic arthritis in December 2023. By this point nearly every joint in my body was affected (apart from my jaw). I had given up most of my hobbies as I was unable to do them due to how much the JIA was affecting me. 

 In terms of medication, first they tried sulfasalazine, which unfortunately didn’t help. Around this time, they decided to update my diagnosis to enthesitis related juvenile idiopathic arthritis. Then it was on to methotrexate. I had to try two different doses and it still did nothing to help. At this time, my health was deteriorating rapidly. We tried steroid injections multiple times and they only made me worse. In January 2025, they decided to go down the biologic pathway and I started adalimumab. Unfortunately, this did not show any signs of improving my condition. In June 2025, they decided it was best to swap which biologic I was taking. So I am currently on Ustekinumab, I am currently showing no signs of improvement on this medication. Though I realise it is still early days for this latest medication and that it can take time to work.

 Living with JIA has affected my life and my family’s life massively. We have had to adapt a lot of things to allow them to be accessible to me as I currently use crutches all the time as my mobility is extremely poor.

 I am about to go into my second year at university studying Biomedical science with the hope of one day becoming a doctor. I would love to help improve awareness of JIA so that those with JIA don’t get incorrectly told that they have ‘growing pains’ like I was told. I want to support children and young people in getting a diagnosis and help much quicker. University is hard especially when you have to balance JIA alongside it, but with accommodations and support I am determined to complete my degree.

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

If you or a family member have JIA and are heading to university, you can find tips and ideas to access support 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 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