Many of my friends now know that I was diagnosed with Juvenile Idiopathic Arthritis at the age of 10. It was known as Juvenile Chronic Arthritis* in those days. In fact, it has been known by various names over time including, rather unhelpfully, JRA (Juvenile Rheumatoid Arthritis).
RA or Rheumatoid Arthritis is a different condition from JIA. Whilst treatments for both conditions these days are generally similar, it is important to know that the two conditions are different as disease progression and outcomes can vary.
Yet, for many many years, I was led to believe that I had RA once I reached adulthood. Back in the days when I was diagnosed with JIA, there were no paediatric rheumatologists. I believe Paediatric Rheumatology became a separate discipline in the UK in 2006.
It was after a long spell of being in excrutiating levels of pain in my left hip, many visits to the GP and two hospital stays, LOADS of x-rays, and a hip biopsy operation, that an adult rheumatologist eventually diagnosed me as having Juvenile Arthritis. I have recently managed to get hold of my notes from that time and the rheumatologist has also queried whether I may have Enthesitis-related arthritis which would certainly go some way to explain my ongoing back pain and how, even after a hip replacement, my hip hasn't improved in the way it was supposed to.
I dropped out of the medical system for my JIA at around the age of 15 after being told there was little more that could be done for me. The joint damage was severe by that point as the only medications available to me were paracetamol and ibuprofen. Sadly, DMARDS (disease-modifying anti-rheumatic drugs) and Biologics that are available to those with JIA these days were not widely in use back then and were never offered to me then or since. I knew at that point that I would have to have a hip replacement (by the age of 20 they had said, though I struggled on for two more decades before my hip was replaced).
I learnt to self-manage my own pain and continue to use over the counter drugs as needed. I did ask to see a rheumatologist when at university - but that was a one-off appointment, there was no follow-up. Looking back at the letters, I was described as having "arthritis" and the doctor was having to deduce my history from what he could see going on with my hip at that time (by that point the damage done to my hip was akin to Osteoarthritis damage and so described as such). I was on my own again having to self-manage my pain for another decade.
When Miss T was born, my back pain flared hugely and led to me seeing the doctor again. I was referred to our local rheumatology team but despite my requests to see a rheumatologist, I never got to see one. I was placed under the care of a "GP with an interest in Rheumatology". He was a caring doctor but looking back now, I can see that with my long and complex history of arthritis, I really should have been seen by a core member of the rheumatology team. Someone who has knowledge of JIA and adults with JIA.
Throughout these years, my JIA was described as RA by the GPs and any other doctors I saw for any reason. I didn't know any better to correct them as I had no idea then that a condition that included the term "juvenile" would still apply to adults. I was even featured in magazines and publications where I myself would describe my condition as "Well I suppose it is called RA now I'm an adult". How wrong I was!
It was only when my own daughter was diagnosed and the volunteering I do with Juvenile Arthritis Research that I learnt that my own diagnosis is still JIA. I am, and always will be, an "adult with JIA."
Some might argue that the label of what the condition is called does not matter as much getting the right treatment. But it does matter. Had I known and understood the correct name for my diagnosis, I could have asked to see the right doctors when I needed to. Perhaps that would have then opened up different treatment routes for me instead of the lifetime of pain that I have lived with.
If this inaccuracy in mis-labelling JIA as RA in adulthood is happening on a larger scale, which I believe it is, then that distorts research and analysis being done into finding out long-term outcomes for those with JIA making it harder to find the answers to the questions I have as a parent of a child with JIA.
Yes children can get arthritis. If symptoms start before the age of 16, it is JIA.
Yes adults can have JIA, but they can't "get" JIA - remembering that symptom onset has to be before the age of 16 for it to be JIA.
It is technically possible for someone to also get a second condition such as RA in adulthood but it is far more likely that it is a flare of their existing JIA if their original symptoms were under the age of 16.
It is also possible to have JIA and then get osteoarthritis, either later in life as anyone else might do with the "wear and tear" of joints, or as a result of joint damage caused by JIA as happened in my case.
As I come across other adults who describe themselves as having RA "since the age of 5" or "since the age of 13" - I know that it is actually JIA that they have but it is a difficult conversation to have to correct them. Having a chronic condition can become part of our identities as much as we may try not to let it. I believe it really needs to come from the medical profession with doctors (particularly frontline health professionals such as GPs) to be better educated in recognising and understanding JIA. That would help more people receive the right treatment throughout their lives and for those under the age of 16 to get that initial diagnosis of JIA more promptly - which I know makes a huge difference to outcomes for them and could prevent lifelong joint damage and disability. That's before I've even mentioned the risk of uveitis (inflammation of part of the eye which can happen in 1 in 5 children with JIA - left untreated can lead to loss of sight).
So getting the diagnosis and "label" right is vital!
* There are some very small differences in the classification of JIA, JCA and JRA, but in the majority of cases JIA, JCA and JRA have been used to describe what is now known as JIA.
You can read more blogposts about mine and Miss T's JIA journey here.
If you are concerned about a child or young person you know who is struggling with pain or inflammation of their joints or struggling to do something they could do previously, please see www.thinkJIA.org for signs and symptoms of JIA.
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