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Dean

Age at interview: 19
Age at diagnosis: 2
Brief Outline: Dean was diagnosed with arthritis when he was two years old. The arthritis went away when he was six. When he was thirteen he developed diabetes and arthritis. He stopped taking methotrexate because of panic attacks. He is allergic to anti-inflammatories.
Background: Dean is a full-time student. He also works in retail. He is white British.

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Dean was nineteen at the time of the interview. He was diagnosed when he was two years old. He does not remember his early symptoms but his mum said that he had bad rashes and swelling. Dean “grew out” of his arthritis when he was six but it came back when he was thirteen. He was diagnosed with diabetes shortly before being diagnosed with arthritis. Having diabetes was “a big shock” for him. 
 
Dean developed rashes on his ankles which is mum recognised from the first time he hard arthritis. Dean saw a rheumatologist who diagnosed him after a blood test. He was prescribed methotrexate tablets and was given a steroid injection in his ankle. 
 
Dean was on methotrexate tablets for a year. They made him sick and he had problems sleeping. He tried taking methotrexate injections but he started having panic attacks. He read that the medicine was used for cancer patients and his mum was pregnant at the time. He was worried that if he spilt the methotrexate it would harm her. He decided to stop taking methotrexate. 
 
Dean discovered that he was allergic to anti-inflammatories after having a reaction to them in hospital. At the time of the interview Dean was taking painkillers and steroid tablets. He sometimes has his joints aspirated and injected with steroids. He currently experiences stiffness in the mornings, lots of swelling, night sweats and pain. He can also get very tired. He sometimes feels down when his arthritis is bad and wonders why he has the condition. He finds it difficult managing the arthritis and the diabetes at the same time. He said, “If I'm going to exercise to get my blood sugar down then I'm going to be sore from the arthritis and if I take like tablets for the arthritis then my blood sugar's going to be high and I just can't balance it.”
 
 

An x-ray it showed Dean's jaw did not fit in the socket properly. He was told that he could have...

An x-ray it showed Dean's jaw did not fit in the socket properly. He was told that he could have...

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OK and when you go for those ultrasounds how do you feel?
 
I feel a bit depressed because I'm scared what the results going to be. Like when I went up I think it was three weeks ago I didn't know I had it in my neck and they were asking me to move side to side and obviously, you know, like during the day as you're moving your neck you'd notice but I didn't notice and then , and then I knew my hip was bad and they checked it and they're going to inject it now and about three or two years ago I got an x-ray of my jaw and this one's nearly gone, like worn away and it locks because it's not properly in the socket and they went to take x-rays three weeks ago but they thought they were doing this jaw wrong because they didn't say anything and I started laughing and they were just like, "What are you laughing at now?" and I just goes , "It's just the way it is," and they went, "Right OK," and she's going to inject my jaw as well but the specialist once told me that he could replace it but I don't know if like I want to get cut open and get like a fake jaw, be weird and plus they only last like four years anyway. 
 
 

Dean was prescribed methotrexate injections. He had panic attacks about the injections and...

Dean was prescribed methotrexate injections. He had panic attacks about the injections and...

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They put me on methotrexate tablets I think it was for the year after and they told me there'd be no side-effects with them but I got very ill with them, they made me sick and I couldn't sleep and then I went off them and they said that the injection form of it would be better for me and then…so I had to be trained to take that myself because it's used for cancer patients as well or something and Mammy was pregnant at the time and if it's spilt it would have been harmful for her like. So I started taking it but then I started taking panic attacks with it so I don't know if that was the side effects or just me but I was taking them anyway and I couldn't do it anymore. So then I withdrew from the injections myself and I was just on paracetamol for a while and now I'm on some other drug that I don't even know the name of.
 
OK. And tell me about the panic attacks.
 
I couldn't, I'd faint and then I'd black out and I wouldn't know what was going on.
 
And you suspected that they may have been caused by the injections of the methotrexate?
 
Mm
 
And did you discuss that with anybody?
 
I discussed it with the doctors but they said it was just me, I don't know. Because I'm used to taking my own injections but not that one and it made me feel sick as well so you know.
 
You used to taking your own injections?
 
Insulin
 
Insulin OK. And so did you have to inject yourself with methotrexate?
 
Yeah
 
And so tell me about actually doing that. What did that involve?
 
Involved, I had to take a lot of safety procedures doing it. I had to be isolated on me own, had, it didn't matter if I got it on my skin so then I didn't have to wear gloves but if Mammy or anybody else was around me they'd have to wear them and; so I just was on my own and I took it but then I'd get sick and then I wouldn't want to take it again if you know what I mean?
 
Why did you not want to take it again?
 
Because I didn't want the panic attacks and everything.
 
So how many times would you have taken it yourself?
 
Probably four of it, five months and then I got moved up to [town] to get it for the nurses to give me it instead, said it would be easier on me but then I'd still have panic attacks.
 
So how many times a day would you have to inject it?
 
It was only I think it was twice a week.
 
 

Dean thought it was “embarrassing” to be in paediatric services at 19 years old. However, he was...

Dean thought it was “embarrassing” to be in paediatric services at 19 years old. However, he was...

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But when you were initially diagnosed you were thirteen you were sort of paediatrics services at the hospital?
 
Yeah
 
And then you've moved on to adolescent or adult services?
 
No
 
No you're still in paediatric services?
 
How embarrassing.
 
Do you feel that's embarrassing?
 
Yeah, because I'll be the oldest one now.
 
Right and I mean when you go are there other small children or young people?
 
Yeah, but I'd like it like that because they'd be looking up to me and then I'll be telling them it will be alright and everything.
 
So do you kind of support other people when you go to your appointments?
 
When I was there, when I was staying there I would.
 
What? Sorry say it again.
 
Well I used to stay in the hospital for the procedures and then I'd like talk to wee ones or whatever.
 
And what kind of things do they ask you?
 
They're just feel like, they'd only be like wee innocent things, they wouldn't know anything really but then I'd just like talk to them and be like, "No it'll be fine," and ask them if they're OK and just, you know, just general stuff.
 
Did anyone do that for you in your early days?
 
Yeah, yeah.
 
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