Ryan

Age at interview: 12

Age at diagnosis: 8

Brief Outline: Ryan was diagnosed in 2007 as having juvenile idiopathic polyarticular arthritis. He is currently participating in a medical trial for the drug' tocilizumab.

Background: Ryan lives with his mum and brother and is still at school. He is white British.

More about me...

Ryan originally hurt himself whilst playing football with friends. He was the goalkeeper and hit his knee on the floor whilst diving for the ball. Although Ryan only felt pain for a small amount of time, his knee became very swollen and he struggled to walk. Because the swelling was so severe, Ryan and his mum visited their GP. The GP referred Ryan to the hospital on an emergency basis. After several weeks of examinations and tests by different medical professionals, Ryan was diagnosed as having juvenile idiopathic arthritis.

 

Ryan’s condition declined before it improved. He developed pain and swelling in eleven joints (including his toes, fingers, wrists, feet, knees and hips). He began taking oral methotrexate which made him sick. Ryan’s rheumatologist was also giving Ryan regular steroid injections in each of his swollen joints. Being in the hospital upset Ryan so it was agreed that his mum would try to inject Ryan with methotrexate at home. However, Ryan stopped coming home from school on the days that he was due his injection and missed several of them. Ryan’s condition got worse. His joints seized up and he was unable to get out of bed, wash, dress or feed himself without his mum’s help. Ryan could not attend school so a teacher came to his house during the day. Ryan saw his friends less and less.

 

Ryan’s condition improved after he was placed on a drug trial at his local hospital. He has a tocilizumab infusion once a month and over time the number of joints affected by Ryan’s arthritis has reduced from eleven to three. Ryan also has a physiotherapist who plays exercise games with him in a warm hydrotherapy pool. These exercises reduce the amount of stiffness Ryan feels in his joints each morning. Ryan is now back at school and is able to play outside with his friends again. His favourite subjects are maths, science and PE. Because his school specialises in PE, Ryan has opportunities to play different kinds of sport. On a good day Ryan enjoys playing volleyball and table tennis. When Ryan’s joints are flaring up he can join others in the region and play wheelchair basketball.

 

Ryan plays exercise games with his physiotherapist when he goes to hydrotherapy. Afterwards he...

So and what do you use this hydro pool for? What does it do?

 

Like it gets my joints better and more movement in it because I’m doing exercises for it but it’s easier ‘cos it’s in like warm water.

 

And what kind of exercises do you do? Is it just the swimming?

 

No stretching my legs and like walking up and down the pool and walking on my knees higher, I usually walk on my heels and that. Getting my legs better.

 

Did somebody tell you what you’re supposed to do in the pool?

 

Yeah. There’s like a person, when, before, there’s a physio there that tells me what to do and that, we play like a game but it’s not like a proper game ‘cos like once she put weights on my legs, so I had to jump to try and get the ball and it was like helping my legs. I had to work harder, bend, work more. ‘Cos I normally just jump normally, but I had to bend my legs to jump higher to get it. It was quite fun that time.

 

And how do you feel afterwards, once you’ve done that?

 

Tired but more better, ‘cos I can move my legs better and that.

 

So you’re tired, but you’ve got, you can actually move more afterwards.

 

Yeah.

 

You’re not stiff afterwards?

 

No but the next day I will be after sleeping and that, ‘cos I’m not, I’m lying straight and they, I normally do that every Friday.

 

Have you ever missed a day?

 

Yeah.

 

And what happens if you miss a day?

 

Like nothing, they just, I phone up like, ‘cos the, like last week I fractured my arm playing football, so I couldn’t go in the Hydro so I haven’t been able to do it.

 

Okay. And what happens to your body if you don’t go in. Does anything happen? Does it get stiffer or is it the same?

 

Yeah. A bit stiffer but it’s not really that bad.

 

Ryan had problems sleeping because of the pain in his knee. He tried sleeping over at a friend’s...

And what about things like sleep. I know at the beginning you talked about you’re restless and you’re worried before and couldn’t get to sleep. Is your sleep affected now?

 

It’s still affected ‘cause my knee hurts I won’t get to sleep as easy ‘cause it’ll be too painful to get to sleep. Then when I start to go to sleep it’ll start hurting ‘cause I’m lying there, and then once we tried putting a pillow underneath it and it got locked up over the pillow and I couldn’t move. When I first had, like when I was nine my Mum had to pick me out of bed and that and pick me out of the bath and that, and I found that really annoying ‘cause I didn’t, ‘cause I like, I didn’t mind my Mum doing it, it’s just I didn’t like it ‘cause I really wanted to do it on my own. So it was annoying to me really.

 

And do you ever sleep over at friends’ houses?

 

No. I’ve stayed over a few times but twice I’ve came back ‘cos my legs were hurting and I couldn’t sleep there ‘cos my arthritis was hurting.

 

And was it, did they bring you back early in the morning?

 

Once I came back like at eleven because I was too stiff and it was hurting me too much to try and get to sleep.

 

Does it, I mean, you can say as much as you like, but does it affect being with friends?

 

Yeah

 

Your social… 

 

Because my friends like to like play out like for most of the day, when I’ll just play out for parts of it, and I would play out there for all day but I’d have to rest and not run around all day.

 

Ryan used crutches when he found it difficult to walk. Using the crutches affected his fingers,...

‘Cause like if I use the crutches and it’s like putting my arm weight on it, I’m like bending it and it was keeping it bent for a while it made my wrist go up and my, only this elbow ever went up, this one’s alright. But this wrist is a mess isn’t it. Some of my fingers are swollen. And on one of my fingers I’ve got like this critical swelling and it won’t go down at all ever.

 

Never ever?

 

No. ‘Cause it’s like stays like that. ‘Cause it’s really bad and the winter will start to do it again.

 

Can you move it, even though it’s swollen?

 

Yeah.

 

And when you say “Go up,” do you mean that it swells up?

 

Yeah. Swells up and goes really stiff so I can move it like that but once it swells up I can move it like that and that’s it.

 

And is there a pain with it, or is it just stiff?

 

Yeah it hurts when I move it, like if I moved it past there it would really hurt.

 

And that’s only if you use the crutches?

 

Yeah. After I’ve used the crutches it would hurt my elbows and that, and my wrists if I move them too much.

 

Ryan’s friends understand that he sometimes can’t go out to play because his knee hurts. Ryan’s...

Yeah. Well my mates didn’t know what I had. But now they know and they come over and they understand what it is and like if I say I’m not playing out ‘cause my knees hurting they’ll go okay and they won’t get like annoyed with me. ‘Cause they’ll understand like more how I feel and they, at the start of it they didn’t know what it was. 

 

Like sometimes like well I can’t carry my bag ‘cos it’s hurting my shoulders or something, my mates will carry it to my lesson or something.

 

So who, who started this, was it the friends that came forward or did the school help to find some friends?

 

No just my normal friends that I had even before it, I had my arthritis.

 

Oh. And were these friends that you had in junior school, in primary school?

 

Yeah.

 

And they came to secondary school with you, is that right?

 

Yeah, some of them did.

 

So they understand what it’s like. Do you tell them what it’s like or do other people...?

 

I do normally. It’s easier to tell ‘em now than it was at the start.

 

Do they understand?

 

Yeah.

 

So what kind of things do they do to help you?

 

They carry my bags and like make sure I’m alright and that, and stuff like if I’m getting my dinner and it’s too heavy they’ll carry it for me to the table and that.

 

And do they help you in class with any work? 

 

Sometimes yeah.

 

What kind of things do they do?

 

Well like if I can’t write and they’ve finished theirs they’ll help me write it and I’ll tell them the answers and that and stuff. They’ll help me do my work if I don’t get it.

 

And sometimes you say they sleep over?

 

Yeah.