Paediatric Rheumatology by Dr Zahoor Elahi Khan. “ zkpaediatrics”

Let's take a moment to focus on Uveitis:
Uveitis affects around 1 in 5 children with Juvenile Idiopathic Arthritis (JIA). Uveitis is inflammation inside the eye and it is vital for children with JIA to have regular eye checks in order to detect and treat uveitis.

There can be no obvious symptoms at the start, but if left untreated uveitis can have a serious impact on the eye and cause loss of vision.

Your eye check may be with an ophthalmologist (specialist eye doctor), an orthoptist (vision and eye health specialist) or an optometrist (specialised hospital based optician).

They will be able to check your sight as well as look inside the eye for inflamed cells using their special microscope (called a slit lamp). This doesn't hurt and usually only takes a few minutes.

So if your child has juvenile arthritis, make sure they are regularly attending their eye appointments too, even if there are no obvious symptoms of uveitis and even if their juvenile arthritis is well-controlled.

You can find out more about uveitis on our website and in our "My JIA" booklet at www.jarproject.org/myjia

On the final day of Volunteer's Week, the theme for today is "A time to say thanks" and we are incredibly grateful to our volunteers, without whom we wouldn't exist.

As a volunteer-run charity, everything we do is made possible by our amazing volunteers. Wonderful people, many of whom are parents of children with JIA or have JIA themselves, who give up their time to help support others.

From sending out our "Little Box of Hope" support packs (which were developed by Sam and her daughter Abbie who still lovingly pack and post each of the boxes), to working on research studies (our lead-research volunteer has a background in biomedical research), to developing resources and proof-checking documents (a small team of JIA patients and parents do an amazing job of regularly helping with this), to updating our social media channels and website, as well as volunteers with expertise in graphic design, the legal profession and clinical practice who support us with specific tasks and projects. And of course, those of you who have organised fundraising events and activities and given up your time to raise funds for the vital work that we do - we couldn't do it without you!

To each and everyone of our volunteers - the BIGGEST thank you to you!

This was Vincent's first WORD day, and Vincent was proud to hold his poster to raise awareness that arthritis can affect people of all ages including young children.

It was the day after he started on his biologics treatment having been diagnosed with Juvenile Idiopathic Arthritis (JIA) at the age of 2 last November.

His parents, Kate and Paul, and his big brother Max say "We all fight for him!"

A diagnosis of JIA really does affect the whole family and we have seen so many cases of incredible sibling support. Parents and carers are so important in helping children live well despite having JIA. We know how difficult it can be at times, so it is always heart warming to hear stories of how parents/carers, siblings, grandparents, aunts, uncles, and friends can come together to support a child with JIA.

Never underestimate the impact you have and like Vincent, with his awesome smile, having a positive attitude despite the challenges can really help a child or young person with JIA. You can be their cheerleader at times when they most need your support.

Well done Vincent!

World yOung Rheumatic Diseases Day (WORD day) is happening tomorrow (Friday 18 March) and we will be sharing lots throughout the day about Juvenile Idiopathic Arthritis (JIA) and how raising awareness of it is vitally important.

Last year for WORD day, we shared a series of posts based on what children and young people with JIA and their parents and carers have told us they wished others knew about their condition.

As we've got lots of new followers since last year, we thought it would be a good idea to re-share some of these posts throughout today in the lead up to WORD day. They can also be found on our WORD day hub at www.jarproject.org/word

Here's the first of our posts:
One of the things that children and young people with JIA hear all too often is "oh my gran / grandad has arthritis" and it makes them want to scream out that JIA is NOT the same type of arthritis as osteoarthritis.

There is no doubt that osteoarthritis can also be incredibly painful and debilitating too but there needs to be increased understanding that JIA is not the same type of arthritis that older people have.

World Young Rheumatic Diseases Day - WORD Day

Here's an amazing photo of Abbie raising awareness of Juvenile Idiopathic Arthritis (JIA).

Abbie was just 1 year old when she was diagnosed with arthritis.

This WORD day, together let's bust the myth that arthritis only affects older people.

Get involved: www.jarproject.org/word

Photo credit: hopeforkidswitharthritis on Instagram

3 monthly Eye check should be part of follow up of children with JIA.

Uveitis is inflammation inside part of the eye that affects around 1 in 5 children who have Juvenile Idiopathic Arthritis (JIA). Left unchecked it can have devastating consequences including damage to the eye and even loss of sight if it remains undetected and untreated.

Symptoms can be hard to spot so, if you have JIA, it is vital to attend regular appointments at an ophthalmology clinic. At the appointment, you will usually have a sight test first by reading letters on a chart (don’t worry if your child is too young to read – the ophthalmology team have clever ways of checking sight and can use pictures and symbols too). Then your eyes will be examined using a special microscope called a slit lamp. This is a photo of a slit lamp.

The whole process doesn’t take very long at all and could save your sight. So make sure you attend your regular eye clinic appointments as they are vital for keeping your eyes healthy.

You can find out more about Uveitis in our Family support section of our website at https://www.jarproject.org/hope

Things you may not know about JIA:

JIA can affect your eyes. In some cases, JIA can cause , which is inflammation inside the eye (you can find out more about uveitis at www.jarproject.org/hope/uveitis). Left unchecked and untreated, it can threaten your sight so it’s really important to get your eyes checked regularly if you have JIA. I get mine checked every 3 months at the hospital.

Many children, including myself, take immune-suppressing drugs. This means that we are at increased risk of catching infections. Even a common childhood illness such as Chicken Pox can seriously affect a child with JIA who is on immune-suppressant medication.

It isn't always easy to get diagnosed with JIA. Personally, I was showing symptoms when I was about 7, which included not being able to move my fingers in the morning. It took three years to get a diagnosis, and by the time I did my arthritis was so bad. When I first went to a rheumatologist, they said it was one of the worst cases they had seen as I had over 40 joints affected. This delay in diagnosis can be a similar experience for others with JIA too.

One of the misconceptions is that juvenile arthritis stops being juvenile arthritis after you turn 18. If you were diagnosed with JIA before the age of 16, your diagnosis stays as JIA for life.

In the UK, around 1 in 1,000 children and young people under 16 have been diagnosed with juvenile arthritis. Yet there is still a great lack of understanding and support for those with juvenile arthritis! This needs to change!

I hope this post can help someone understand JIA that little bit more and can offer the support and understanding that is so desperately needed.
From Sophie.

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