Kyrun has systemic onset juvenile idiopathic arthritis. He was diagnosed when he was six years old. His arthritis has never been managed for more than three months. He has had lots of treatment and spent months at a time in hospital.

Kyrun has systemic onset juvenile idiopathic arthritis. He was diagnosed when he was six years old. His arthritis has never been managed for more than three months. He has had lots of treatment and spent months at a time in hospital.

Kyrun has systemic onset juvenile idiopathic arthritis. He was diagnosed when he was six years old. His arthritis has never been managed for more than three months. He has had lots of treatment and spent months at a time in hospital.

Now and then because like my little brothers are so active, my older brother’s a paramedic, so he’s out all the time. He’s like, I’ll come out let’s go swimming, go out play football, something like that it’s like, Remember I’ve got a condition. I’ve had a hip, both my hips replaced; I’ve got to take it easy So and that causes tension because I feel like I’m like getting him upset because I have to keep reminding him, but it’s not his fault because he’s not at home, he’s like living away so he doesn’t, he’s not like with me 24/7 so, but yeah so.

Okay yeah I know you’ve got, is it two younger brothers?

Yes.

How do they get on with the Arthritis?

They helped me a lot. I just used and abused them as in, cos I couldn’t like bend over like to pick something off the floor so I’d drop my play station remote for example or I’ll say, Come and get this for me but they were so sweet with me they knew like my hips were affected so they always like came to my side like when I was sat they always came up and gave me a hug and like they leant away from my hips, and after having the operation I had a really big like bandage around my leg and they were like, Oh he’s got a special bandage and they used to always give it a kiss before they went to bed. So, yeah.

That’s very good of them. How old are they?

Two and four.

And they kind of understood certain things?

They understood that Ky was in pain and not to like annoy me because I will flip, as in, cos I had such a short temper when I was, when I’m in pain so they knew like not to get me annoyed, but they knew not to like treat me differently sort of thing. Cos I was like able to move up like upper body so I used to play catch all the time and stuff like that, but then like let’s play football and it was, Oh no, can’t so they, yeah they were fine, they were fine.

The reason they’re good is because they’ve stuck by me since I was diagnosed. I’ve grown up with them. They treat me as anyone else. They, we take the piss out of each other so much. And all the lads when I was in hospital for that six months solid, I had my High School Prom, sounding American then, but yeah, my secondary school Prom and they spent the whole day with me, like trying to get me upbeat to go, and they all like got changed with me there, helped me
nd then they’ve all like sorted out like my drug treatment as in to get a nurse to come with me because you’re not allowed to like take medication to, out of the hospital on your own, so they said, it’s Ky’s prom, it’s gonna be like a highlight hopefully a highlight for him and you need to come And they organised, and I didn’t even know, I thought I was gonna struggle that night but they sorted that out and they sorted out all the transport out for me. So it was amazing.

Good times. Was it a good night?

They enjoyed it cos they all got drunk. But I absolutely hated it because I felt so uncomfortable, everyone was staring at me, the teachers wouldn’t leave me alone at all. They asked all the same questions and there were like 20 of them, so they were like, Oh how are you feeling How are you feeling How are you feeling How are you feeling Then, Oh what’s going on What’s going on What’s going on I was like, Why don’t you just tell each other? So just like leave me alone. I’m not here to see you; I’m here to see my friends having a good time

I always say keep your chin up, it’s not the end of the world. You learn how to deal with stuff and don’t hide away from your friends and family because they’re the most understanding people that you will find.

And you have so many opportunities from driving a year younger to meeting new friends and getting a free car through mobility schemes and stuff like that. So yeah don’t get disheartened just from the fact that you’ve got something, and live or try to live your life that you would before you got diagnosed but take it slowly and plan ahead, like a week before you want to do something.

Kyrun has systemic onset juvenile idiopathic arthritis. He was diagnosed when he was six years old. His arthritis has never been managed for more than three months. He has had lots of treatment and spent months at a time in hospital.

Does the medication make you drowsy?

Yes. Especially the morphine it will like slur my words, make me like feel conscious about myself, make me so itchy, and it makes me just feel like, and it, my Mum goes, Are you sure you haven’t taken anything else cos you look a bit out of it But, but yeah it makes you feel a bit light-headed and stuff like that.

And is that the morphine or the fatigue?

Both to be honest.

Interact.

When they like get mixed together it does play up your mind quite a lot.

Okay how does that affect your life?

As in like day to day?

Yeah.

Quite a lot, it affects me quite a lot because I’m, like in the morning it takes me about an hour to get out of bed, just, it doesn’t help that I’m not normally a morning person but the mornings are quite bad and if I have like a rough night I just feel like, Ah, I can’t be bothered at all And then when I have to like when I’m in my wheelchair that affects me because my elbows and shoulders and hands start to hurt, and it’s like ah I have to take some medicine for that all on top of the stuff I’m taking for my legs, which are hurting at that day and time. And then it’s like trying to get about on your own which is quite difficult but I have such a strong like group of friends that they’ve like done so much for me so yeah.

Friends have been important and I’d just quite like to ask about sleep. Is your sleep affected?

Yes definitely.

In what
Due to pain and uncomfortableness, and just yeah just the pain because it’s always in your mind and the swelling can be so uncomfortable as well, so that’s a big part of it. But otherwise I’ve tried so much like I’ve done like the tapes and listened to boring stuff and like tried like the scented candles and the lavender stuff but it never works so.

And do you find you’re in more pain when you’re tired or is it a case that the tiredness brings the pain, or is there not a relationship there really?

When I have pain and when I get tired the pain feels so much worse cos you’re, like your mind tells you not to do stuff because you’re tired and then you think, Oh no, I have to do it but then the pain kicks in when you’re doing it even more. So it’s like, Oh God. I shouldn’t have done this Or I shouldn’t have gone up the stairs and stuff like that so.

I don’t drink when I have my tocilizumab a week before or a week after. Because it affects it really badly, because I learnt from my mistakes. It makes me puke tremendously, I’m out and it makes me so dehydrated when I haven’t got like the tocilizumab in my system, and I know like when I have it, loads of it pumped into me in the week after, before it’s like proper getting like all over my body you can feel it and it makes you when you drink it makes you just try to chuck out all like the substances that the drug, drink so. But my nurses said there’s no harm in you having a drink now and then, but doctors are like, No don’t drink But it’s, they say you can, it’s not, it’s not illegal to drink with medication so it’s your own personal choice, that’s how I think about it. And if it makes you feel good at that particular time then do it.

And finally drugs? We don’t have to talk on camera if you don’t want to?

Tried marijuana, just cos I’m willing to try anything just to get that pain under control. And at the time I tried it I was going through quite a rough patch. It was after my first hip and I was still having the pain to do with the right one and it helped, but it made me feel so guilty because you shouldn’t be doing it. But like my GP said about this like chocolate that has like, it makes you feel, has marijuana in it but it’s not illegal, if it doesn’t seem possible but yeah.

Is that something that he would prescribe?

Yes, yeah.

Did you know anything about arthritis when you were diagnosed?

No. They said, Yeah, you’ve got this, and I remember one of the nurses like finding like an A4 booklet of like explaining like, I think it was a story of a, I think it was, My name’s Sam and I’ve got arthritis. I’ve still got the book today, I remember like a nurse bringing that and that explained a little bit, but it was just arthritis, so there were bit’s like well why do my lungs hurt? Why the, or why have I got a rash? Why have I got swelling? Cos that book didn’t, it was just like arthritis in general, as in just yeah arthritis and that was, it said, oh I think I was worried about my whole body aches and when someone’s got arthritis it’s just one particular joint. And then it could be like when that joint’s died down and got better it could be another joint. But I had like the pain all over. So that was like one of the main like things that was like why haven’t, why has it said that or why have I got that?

Was it a story book?

Yeah it was, it was based on a true story but had to be like oh just Sam and that was it. It didn’t have like any other names or anything else in it. So it was like there was, it was like very basic as well, didn’t really have any like feelings or anything that a young person would say in it. So it was a bit, yeah well not, looking at it now so I could have made this a lot, so much better, so

And can you contact your healthcare team whenever you like?

It takes about half an hour to get through to them because like the doctors are obviously on call, and it takes like ten minutes to track em down. And then it takes them like five minutes to find a phone to phone back. Or if they’re busy like doing something that they do what they want to do, and then find time to speak to you.

Cos I remember being on the phone for about an hour waiting on hold just to speak to a nurse which was just despicable. But I have a yellow card which is when, if I feel like really rubbish I can just go straight to A&E and they go straight through like to take me up to the rheumatology department, which is good when I’m that low, but I wish that could be like give like a little code before you start speaking on the phone and then they put you straight through, like to the consultant or something like that. So it should be like straight on instead of waiting for half an hour just to speak to someone.

Have you gone into hospital much using that system of yellow cards?

Once. And that was when the, all the other treatments failed that I was getting to that point where you need to be like going in, so we just went in there and showed them like, it’s not really, it’s not even yellow, it’s pink. it’s like a form saying this is what he’s got and this is what treatment, and this is what would be, what you would be doing, as in the, to the doctors who are at, in A&E, they say Ahh, right yeah, let’s go and do this for you. Let go put a cannula in and put you in, on the morphine straight away, and then we’ll move you up into the child’s ward, or the Rheumatology ward

And was that when it got really bad? That was before you went in for your six month stretch.

Yeah, That was, no that was the start of the yeah.

And so that was the kind of, the way in which that system was set up you thought was a good idea?

Yeah.

And it was efficient? You just went straight through?

Not straight through. I had to wait for my turn. And then it took a while to find a nurse to cannulate me, and I was like, There’s the stuff, I could do it myself I’ve seen it so many times. And then it was like trying to find a porter to go up there and do that. So it was just those little like little bit’s that they could be like all coming together and say listen to like the yellow card, read it out, and then they go and get the stuff that I need and then do it there and then. And then phone the porter. I don’t mind waiting for a porter cos I’ll be all sorted with the morphine and the treatment is already going in so, yeah, it just takes a little bit of time to find the right people.

My surgeon said about some of the other treatments I could have to do with pain. But we’ve never went through them, some of them were like injections every day and every time you feel pain. Which I think it was a tramadol like 100% tramadol like not 5mls every time you feel a bit of pain and I thought no that’d be a just bit stupid cos it could be like walking down the street, oh I feel pain, inject myself. So I thought no. And there was also my surgeon said as well go through a long lasting morphine, which is an injection every day into every single joint, or like the joints that are affected which you could do at home, but I thought no I’ve had injections into my joints before. They bloody hurt more than like going through a day of like pain. So we thought no just crack on with what we’ve got now, but it seems to be working so
So it’s interesting that you’ve said that, did you, were you given a choice or did you just refuse to take the treatment?

To do with the ones that he suggested?

You mentioned then the morphine and the tramadol and then before I asked about whether or not you were ever given a kind of decision as to different types of drugs, but it sounds like, were you given a decision to do with painkillers?

Yes.

Yes and that was from your normal consultant?

Yeah.

And those two you said no to for those reasons?

Yeah, that my surgeon suggested those two.

Oh not the consultant?

No.

The rheumatologist?

No. And that was just cos we were talking about the pain of the arthritis and he said, Why don’t you try this cos we give this to people that have got, who have to have inject, no surgery and it seems to be working for them so why don’t you have a go at that But we said no just cos of all the hassle and it’s painful enough just to inject myself instead of doing it every time you feel a bit of pain.

And with the tramadol you didn’t want to take it because you didn’t want regular injections. Was that the point?

Yeah.

Okay But with everything else, with all the other drugs where there was no choice. Did they go through what the side effects would be?

Yeah but very like bullet pointed, and they, they weren’t very helpful. Well obviously helpful but the way they said it wasn’t so
Well what would be improved?

Like I said about the leaflets, like say how it could affect your day to day and how you would feel having the symptoms.

So it’s mainly the kind of the weights that you use?

Yeah. Just to get a bit of bulk up because when I’m pushing my chair it’s like you have to do it all the time and when you’ve got like quite like stamina in your muscles you can do it.

Do you like going to the gym?

Yeah. It’s beneficial and the girls love it, so

Indeed that’s one way of looking about it. Okay. Do you do any other kind of exercises, maybe swimming?

Yeah. I used to, I still sometimes swim but when I had that really good month I was swimming competitively so that made me feel a lot better at myself cos I knew I was doing something beneficial, and obviously I was doing it cos I love it as well. So yeah.

Okay. So swimming and going to the gym and those are your main ones. And you still swim now sometimes?

Yeah, sometimes when I have like a, quite a good day I think yeah lets scrap one day and lets go swimming for an hour, but then I’ll regret it the next day so.

It was a rough patch getting diagnosed cos I was so active like played football for county and the way I got diagnosed was I picked up a groin strain from playing a county match and I kept limping after about two weeks solid after, which it shouldn’t happen with groin strain.

So Mum said go straight to the Duty Doctors, like the emergency doctors and then they said, well I’ve had meningitis so I had to be rushed in with like all that meningitis treatment which was for about three days and none of like the signs didn’t improve. So they done lots more other tests from MRI scans to X-rays to the, I think, I’ve forgot what it’s called but it’s like the put dye into the veins and see what’s going on with like veins and arteries and stuff.

And then about two, three weeks later, I was still in hospital, but a particular doctor said I was just faking and I just didn’t want to go to school. So they pretty much forced me to go back home. And then we got a phone call about three days later saying come back in straightaway because there’s some signs on, that the blood tests says that you’ve got some infection, and it can be quite dangerous.

So I got rushed back in. They cleared the infection and then they done some more like back up tests to see if everything was okay. And then they picked up that I have Systemic Arthritis.

Wow. Well thank you for that. That was very eloquent. So could you tell me what kind of symptoms you experience?

Well I had, because I had the groin strain as well, so it was more organly, and like my organs felt so tired, my lungs were like, I was really like short of breathless, but it was also to do with all the weakness in my muscles and around my joints. Which they just thought, because of the groin strain I’ve done like too much and it needs like time to catch up.

And I also had a really like visible rash, which they say is like similar to the meningitis rash but it’s, if you look closely it’s completely different. Hot and cold fevers. Really really raised temperatures. And that’s really about it. Yeah. Due to symptoms and stuff.

I was like happy to know what was going on but I was a bit like disheartened that, like the doctor said there’s no cure for it, but we can dull like the symptoms down and the pain. But it was just like seeing my mum like sat and, opposite to me like crying, that’s the thing that really got to me, that dampener on finally knowing what was going on. But like she said that when we talk about it now that she was just confused and worried and specially because like the doctor said there’s no cure for it, she thought it was like terminal, but when we like asked all the questions and stuff like that they said no, arthritis can’t be terminal at all. And we have like all the proof and stuff like that. So she came a bit more around a bit. I just think like she didn’t want to face up to the fact that, that I’ve got something for the rest of my life but now she just, she just doesn’t look twice, she just knows that I’m me, and I have arthritis. it’s not, Oh he has arthritis, and that’s Kyrun it’s, Kyrun and he has arthritis That’s how I feel that she looks at me now. Yeah.

Yeah. That’s what my mum thought it was. Cos she didn’t know what that "systemic" meant. So and then when the doctors like said about like oh it affects the organs as well, that’s when she thought, Oh right crap it can be terminal But he just said, No it’s not terminal, it just slows and like slows if you like , if I had like a, a sore throat or something then it could spread to get in what, something to do with my lungs, like a chest infection or something like that. From like a cold I could like develop a chest infection so, so she was like, Alright, okay. So it can be like going from the sniffles to an infection. So she knows it’s not terminal now.