WORD Day is an international day has been created to raise awareness and knowledge to help in early diagnoses of young rheumatic diseases. Early intervention changes lives, so this WORD Day, we are sharing diagnosis stories from our juvenile arthritis community. Thank you to Archie, Megan and their families, for sharing their stories below.
Archie, 7 years old
It all started subtly with some aches, pains and tiredness, normal for a 3 year old boy that rarely sat still and had recently dropped his day naps.
It got worse quickly with a swollen knee, inability to run without tripping over and often falling asleep mere hours after he had woken up.
We had numerous visits to our GP, after some time the first stop was a podiatrist for a check-up of his feet, maybe he needed some orthotics? With no luck and even less answers Archie’s left knee was now 3 times the size of his right knee and he also couldn’t straighten it, which made his lower back sore.
I’m a registered nurse, with some experience in adult rheumatology. We also have an extensive family history of JIA, RA and Ankylosing Spondylitis. My older sister was told for years that she just had severe growing pains before being diagnosed with JIA as a adolescent.
On telling our GP about my concerns and family history he told me that JIA would only show in bilateral joints (eg both knees, not just one). As the knee was clearly extremely swollen, warm to touch and caused Archie a lot of pain, he sent us for an x-ray, and then onto a paediatric orthopedic surgeon, again with waiting time for an appointment.
The orthopaedic surgeon took one look at Archie’s knee and asked what we were doing there. I told him about our family history with JIA, how we’ve been told it only affects bilateral joints, but in my experience did not think that was correct. We left with a referral to a pediatric rheumatologist.
9 months after we started the process of getting help we had our first appointment with the paediatric rheumatologist. By this time Archie’s knee was deformed. This made his left leg much shorter than his right causing lower back pain.
Luckily for us, with Archie’s age, growth and physio exercises his knee is almost back to “normal” again, 3 years on.
The waiting time to see a paediatric rheumatologist in the public hospital was another 3 months for us, with the Christmas period coming up as well. We opted to go private, as by then the pain was severe and Archie struggled with walking and extreme fatigue.
It scares me to think how long it would have taken to get a diagnosis if we didn’t have a family history of JIA and I wasn’t a nurse with experience in rheumatology – both which made me keep fighting to see the right specialist.
Archie, now 7 years old, has been on immune suppressants for just over a year, we recently stopped it due to severe side effects and are at this stage waiting to see if his joints worsen, to be able to start on biologics. Like with any autoimmune disease, that can flare up at any point, it’s all a waiting game, although we try to take the wins and run with them!
Megan, 13 years
Megan was diagnosed with Polyarticular JIA in early 2016. Megan’s diagnosis took roughly 2 years to diagnose.
I first realised there was something not “right” with Megan when she would repeatedly fall asleep in class and not be able to keep up with other children her own age.
Roughly 4 months after that Megan started limping and complaining of pain in her ankle. Her ankle appeared swollen and hot and also red for no clear reason. After many many visits to the GP she was sent to the hospital for physio. The physios requested x-rays which came back all clear.
The physio believed Megan had JIA. Megan was referred to two different hospitals. One of which was a specialist centre a little journey from our home. After more bloods which also came back clear the decision was made to the send Megan for a MRI scan which indeed did show JIA.
Megan’s journey has been really tough. Not only on Megan but on the family who has witnessed a drastic change in her. She used to be a very active, happy little girl who was very sociable. Now, for most of the past 4 years, Megan has spent time in hospital and her mobility and her mental health has been severely affected by this terrible condition. As Megan’s immune system is affected, she picks up a lot of bugs which, in turn, means she is unable to attend school for lengthy periods of time. Megan hasn’t been able to attend full time school due to her health which has meant she has fallen behind academically and socially.
It’s taking away all of her childhood and changed the way we are able to function with daily life as a family.
Megan has had many IV steroids, methotrexate injections and now is on her 4th biologic treatment. At any one time in the past, Megan has had up to 35 joints affected and has also gained a diagnosis of chronic pain due to her severe arthritis pain.
Thankfully Megan has had no signs Uveitis in her eyes however she still needs to be checked every few months.
Megan has wonderful support from a wide team that’s involved in her care, from her rheumatology to her psychiatrist and psychologist, physiotherapist.
To find out more visit: https://wordday.org/