10 October 2017

“People don’t know there’s such a thing as juvenile arthritis”

Arseni outside, exchanging a high five with a schoolmateArseni, 12, is part of a Sparks-funded trial led by Professor Lucy Wedderburn at the UCL Great Ormond Street Institute of Child Health (ICH).

The trial aims to predict how children will respond to treatment and how to intervene more appropriately before there is damage to joints and muscles – a more tailor-made approach to treatment. His mum Valeria shares their story:

People just don’t know there is such a thing as juvenile arthritis

“Arseni was four years old when he first complained that his knees were hurting. We didn’t think it could be that bad because one minute he was complaining, and the next minute he was bouncing on his bed. Our GP told us it was probably growing pains and that Arseni should rest for a week – he was doing a lot of tennis and gymnastics.

“After resting at home it got worse. He couldn’t stand or walk. So, we went to A&E and saw a wonderful doctor. Arseni was very skinny and she said his joints were hot and swollen – she diagnosed juvenile arthritis straight away. When my husband Abdul and I were first told we thought ‘that’s what old people get’. It’s an autoimmune disease – your immune system attacks your joints thinking they are foreign bodies.

“Sometimes juvenile arthritis just goes away by itself, nobody knows why. So we didn’t rush to get treatment. It was two months before he had his first weekly steroid injection.

“By the time he was seven years old, his condition had developed into multiple joint arthritis – it was in his ankles, his hands and his shoulders. He was moved on to methotrexate. It’s an aggressive drug, and Arseni has regular blood tests to make sure his liver is not damaged. It also makes him feel really sick. He has his medication on Sunday mornings and he’s not able to do anything all day except fight the sickness.”

Conquering the worry crab

“Arseni was affected psychologically too – he was very scared and unsure of himself and used to follow me around the house. And he was absolutely terrified of blood tests and injections.

“He started seeing a therapist who taught him coping mechanisms. He was shown how to talk-back to his worries. He drew a ‘worry crab’ and every time he coped without crying or
screaming he put a sticker on the crab.

“Eventually the crab was completely covered. With each sticker he became more confident, realising that he could actually fight this. It was fantastic.”

The hidden disability

“They call arthritis the hidden disability because you look at Arseni and think he is just like everybody else. If, for example, we are on public transport and his knees are hurting we can’t ask for a seat because people say ‘he’s a young boy, he doesn’t need to sit down’. It would be wonderful if there was more awareness. People just don’t know there is such a thing as juvenile arthritis.”

Arseni’s story

arseni3It’s very hard for people to understand what’s going on and how I feel. In the very early stages of my arthritis children came up to me saying ‘Have you broken your leg?’ because they knew what that was but, they didn’t know this thing called arthritis.

I think ‘don’t judge a book by its cover’. When I was young I was very skinny, you could literally see my bones. People thought I didn’t eat enough but it was because of my arthritis, I felt sick from the medicine and didn’t have much appetite. I’ve even been called a wimp because I can’t do certain sports like rugby because if I get bashed my arthritis flares up.

I like sports a lot. It’s hard to pick my favourite out of tennis, hockey and football. I guess its football – Cristiano Ronaldo is the best footballer. I remember being in Turkey on holiday and playing football. At times when I kicked the ball I could hear a click in my knee.

The pain, like a pulling pain, gets stuck in your mind. So when I got back to school and played football I was scared to kick the ball properly in case my knee clicked again.

I like just hanging out with my friends too. It’s easy to speak to them if something isn’t going well. I know they are there for me. Last year, when I had to go to school on crutches they took me in the lift and stayed inside at lunch break with me.

I feel much better now than I did, but there are still some restrictions. There’s always that odd time, say when I’m playing football and halfway through the match my knee starts aching, not hurting, but aching and then I know it’s still there.

Arseni playing football in school uniform

Arseni continues to see Lucy Wedderburn and her team for his tailor-made arthritis treatment, enabling him to continue to get the most out of life.

If you would like to help Sparks fund more pioneering research to help youngsters like Arseni, please consider making a donation or taking part in a fundraising event.