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A guide to understanding juvenile arthritis

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Considering how many people are affected by juvenile arthritis, it is a shame that more people aren't aware of it. 

Arthritis, especially in students and young people, is an often misunderstood and overlooked condition due to the common misconception that it only occurs in older people. Juvenile arthritis, meaning that the condition is discovered before the age of 16 is not uncommon – according to NRAS, there are between 1000-1500 children diagnosed with juvenile idiopathic arthritis (JIA) every year in the U.K. 

One of the most common types of arthritis in young people is JIA (juvenile idiopathic arthritis), along with JRA (R standing for Rheumatoid). Idiopathic means that the cause is unknown. JIA was developed as a classification of arthritis to refine the broadness of JRA, hence they overlap, but are not completely different. There are several sub-types of JIA under this ‘umbrella’ term, including oligoarthritis, which affects between two and four joints in the first six months, and polyarthritis, which affects five or more joints in the first six months. There are two types of polyarthritis – one where a blood test produces a positive result for rheumatoid factor and the other that doesn’t.

Arthritis is generally thought to be caused by the person’s immune system seeing the lining of joints as ‘foreign’ and subsequently attacking it, causing joint swelling and inflammation. Symptoms can include stiffness, pain, limping, fatigue, weight loss, eye problems and fever. Severe conditions where there are risks of long-term damage are treated with medication, which is usually a self-administered injection weekly. This medication can often have initial side effects such as sickness.

The lack of understanding surrounding what juvenile arthritis is, and often an underestimation of its severity can make it difficult for students to cope, especially those living away from home.

One student told us about her experience:

Charlotte, University of Exeter:

"My condition is polyarthritis JIA, which has overall been active in 10 joints in my body. The worst joints that have been affected (in the sense that the bone has been eroded or the joint damaged) are my wrists, jaw and my knees. I’m treated with a weekly injection of etanercept, which controls my symptoms to an extent, but I do still experience aching and swelling in my knees after exercise or long walks where the joint is under pressure. Without medication, I would be suffering from inflexible wrists, knees, ankles and a locked jaw, and chronic neck stiffness. I would have flare ups when I wasn’t on it.

I was worried prior to university that storing my medication would be a problem, given that getting in touch with the medical services wasn’t as easy as it could’ve been and the availability of mini-fridges in rooms wasn’t made clear in accommodation applications – I had to be vigilant to ensure this was put in place. However, over the duration of first year, arranging delivery and storing medication in a fridge in my room has been really efficient and I haven’t had any problems… except for the fact that the massive fridge takes up a lot of floor space, but beggars can’t be choosers!

One of the biggest difficulties about having JIA at university is that, in my case, it’s practically an invisible illness. People, therefore, don’t always understand why I’m limited in some ways or why I take extra precautions. When I do explain, people have never heard of young people having an arthritic condition. This stigma makes it difficult to tell people at first. Whilst it can be hard that many do not know about the disease, I have found that the lack of knowledge provides ample opportunity to explain and educate in regards to the condition and its impacts on my day-to-day life. Being a proactive and involved student with JIA is by no means easy, and often I have to remind myself not to overdo it: sticking to my physical limits, which does mean I have to say no to some things. However, a positive that has come out of my experience has been raising awareness about the impacts of JIA, how it can be treated, and discussions with my flatmates and friends".

As shown, there needs to be more awareness surrounding juvenile arthritis in order for those suffering to feel that their condition is understood by their peers.

It is important that we educate ourselves on the symptoms and thus challenge the notion that arthritis is not a ‘young people’s condition’, leading to these feelings of alienation and isolation. Encouragingly, despite this, when managed correctly (often with medication), the imposed limitations of juvenile arthritis do not stop those living with the disease from gaining independence and normality.

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