Heather's story: "My own journey has inspired my career"

Arthritis dismissed as 'growing pains'

Heather Anthony, 19, from Staffordshire, had a long journey to diagnosis. From the age of seven, their symptoms were dismissed as sporting injuries and ‘growing pains’. Thankfully, with the support of their physio, they were finally diagnosed with Juvenile Idiopathic Arthritis (JIA) at 17. Despite the condition, Heather achieved 'A' levels and is now at University of Worcester studying Biomedical Science and, inspired by their own experience, they aim to become a GP or Rheumatologist to ensure other children get the right diagnosis and support.

"It’s been an incredibly long journey to diagnosis for me; 10 long years. I was seven when I had swelling in my right leg and couldn’t bear weight, having to give up the gymnastics and competitive running that I loved was so difficult.

Mum took me to the GP who said it was a sporting injury, a sprain, happened all the time and we just needed to put ice on it and rest for six weeks. This was despite blood tests showing high levels of inflammation.

A few months later, both knees and ankles were swollen, both legs affected, I could walk but no way could I run. I haven’t run since. We went back to the same GP who, again did bloods and the inflammation was sky high, but he said that it was ‘growing pains’ and I should take ibuprofen. We did what he said, we didn’t know any better.

Then my hips, spine and shoulders started to be affected. Back and forth to the GP and always the same answer, ‘growing pains’, when I was 15 he said, ‘sometimes women just get pains’. We were so confused and incredibly frustrated but, unfortunately, he was the only GP in the area so we were stuck.

Bloods kept showing ridiculously high inflammation levels, markers for arthritis, and really high ANA levels which are auto-immune condition markers, but all those signs were ignored. My aunt had early onset rheumatoid arthritis which we mentioned but the GP was insistent, young people do not get arthritis. So we carried on with life as best we could. I did my GCSEs with no support and we just put the swelling and the pain down to me growing.

Rheumatologist finds auto-immune condition

By the time I was 16, we’d had enough and went to the GP to demand a referral to a rheumatologist which he reluctantly agreed to do but insisted it would be a waste of time.

 After six months on a waiting list, we saw the rheumatologist who did some bloods but this was following Covid and I was dismissed with an appointment for physical therapy.

I will forever owe that physio who was clear something was not right when I explained I’d had to give up the sports I loved, wasn’t able to socialise with friends and couldn’t stand for a long time. They pushed for me to have another rheumatology appointment where I saw two specialists and the second one diagnosed Polyarticular Juvenile Idiopathic Arthritis, an autoimmune disease where the immune system attacks five or more joints causing swelling, pain and stiffness.

By that point, it was affecting every joint but my neck and jaw so it was a relief to have someone say ‘you’re not making this up’ but also hard to hear that it was something called JIA as there’s no cure. We did blindly hope that there might be a way to fix it, like tablets for the rest of my life, and for many people medication does work but, unfortunately, not for me.

Diagnosed with Enthesitis-related JIA

I was approaching 'A' levels, the fatigue was getting unbearable and we weren’t getting any help. The rheumatologist tried sulfasalazine, a disease modifying anti-rheumatic drug, and joint steroid injections but none of it worked and, before long, I needed crutches full time to walk.

Next, I had methotrexate, first 15mg then 20mg, which I was on for almost a year but neither dose worked. It was around this time that they updated my diagnosis to Enthesitis-related JIA, inflammation where tendons and ligaments connect to the bones.

In January 2025, I was prescribed another drug called adalimumab and then, in June, ustekinumab, but my symptoms are worse so they will try something new in December.

Despite this, I’m beyond proud to have got my 'A' levels and got into university because there were times it seemed impossible. School refused any support, no scribe, no reader to help with my dyslexia and no additional time or rest breaks as they didn’t understand the impact of my arthritis. I had wanted to go straight into medicine but I’m now on a longer path to where I want to go, a degree then graduate entry into medicine which will take longer and cost more but I’m determined to get there.

I’d always wanted to go into medicine but my own experience has inspired me to choose a career as a GP or rheumatologist because I want to make sure no other child with this condition is dismissed in the way I was.

We’ll never know if an early diagnosis would have made a difference. Would I be in remission now? Maybe I wouldn’t need a wheelchair. I’m not bitter, our GP may well have been told at med school that kids don’t get arthritis but they do.

Fighting for support is worth it

JIA took much from my childhood - sport, a social life - because I couldn’t meet friends outside of school. Even at school, I was isolated, spending lunchtime in the classroom because I couldn’t walk down the stairs, getting laughed at in PE because other kids, even teachers, didn’t understand. Staying positive can be difficult and I’ve had points of depression because fighting for support, for change, is exhausting but it is worth it. 

It’s been an abnormal journey for me, most people are under 16 when they’re diagnosed with JIA but we know I will still have it as an adult and there needs to be more awareness because of the impact. JIA affects my muscles and ligaments but may also affect my eyes, unlike someone with another type like rheumatoid arthritis, so I’ll need regular eye checks as part of my treatment.

Finding a real sense of community at Arthritis UK

Awareness is vital which is why Arthritis UK’s work is so important. It’s why I’ve become an advocate on social media to highlight the impact of JIA and, hopefully, create a wider understanding of it. I’ve also found a real sense of community amongst those with chronic illness which has made me feel less alone. I want other young people to know that they’re not alone, that’s there is support out there for them too."