Jenna

Age at interview: 14

Age at diagnosis: 10

Brief Outline: Jenna has polyarticular juvenile idiopathic arthritis (JIA). She is on a medical trial for the drug tocilizumab and has improved lots since being on it. Jenna remains positive about her arthritis.

Background: Jenna is a student studying for her GCSEs. She lives with her parents and younger sister. She is white British.

More about me...

Jenna has polyarticular juvenile idiopathic arthritis (JIA). Before being diagnosed Jenna experienced pains in her hands and feet. The GP said that these were just growing pains and not to worry. Jenna then started experiencing pains in her shoulder and knee. The GP said there was nothing wrong. Finally, Jenna’s fingers became stiff and she was unable to bend her index finger. Jenna’s mum insisted that Jenna was sent for blood tests at the local hospital. The blood tests did not show that Jenna had arthritis (they were not rheumatoid factor positive). The paediatrician could not explain why Jenna was experiencing problems with her joints. A rheumatologist saw Jenna and more tests were done (including an MRI, X-rays of her hands, physical examinations and further blood tests). After the tests the rheumatologist diagnosed Jenna has having JIA.

 

Jenna has had various medications in the past. She is currently taking part in a medical trial for the drug, tocilizumab. Jenna’s condition has improved significantly since being on tocilizumab and most of the aches, pains and stiffness have gone.

 

Jenna has had very positive experiences of her hospital treatment. She is never nervous and enjoys taking a day off school each month to receive her medication. She finds all the nurses friendly and has a good relationship with them. Jenna would like to become a nurse when she leaves school. 

 

Jenna’s mum, Karen, has rheumatoid arthritis. Karen is knowledgeable about arthritis and Jenna relies on her for information and support.

 

Jenna enjoys cheerleading and street dancing. Her cheerleading team recently received first prize in a competition.

 

Jenna claimed travel expenses to and from the hospital when she was on a drugs trial but has to pay for herself now. Her mum, Karen, stopped working full-time when she developed arthritis herself.

Financial support, do you receive anything?

 

Not for Jenna no, no we don’t get any help. The only help we do get with being on, since we’ve been on the drug trial, we used to get travelling expenses to go down to [Hospital] but I presume, they haven’t told me, but I presume now that we’re not on the drug trial even though she’s having the same drug, I can’t see that they’ll pay us to go so we’ll probably have to find that cost ourselves, which is quite substantial really when you add it all up. The petrol to get there, it’s a good three quarters of an hour each way if the traffic’s good and then you’ve got the car parking and then you’ve got the food while you’re there and the drinks while you’re there because you’re there for quite a while. We generally go to the café and have dinner so it, you know, there are quite considerable financial implications on it really.

 

Do you think that your lack of kind of financial support is because you’re not entitled to it?

 

Yes I think because my husband is a good wage earner, we’re not entitled to; possibly disability allowance she might be entitled to, I’ve never really gone into it. I’ve gone into for myself. I didn’t know about it until I went to the course I explained about earlier where I met other people with arthritis and one of the other girls who was a similar age to me, she told me about disability living allowance and said she could, qualified for it and suggested that I apply. So I then did go on the internet and looked it up about it and eventually I did get it an award for it so I do get some kind of help. But since I’ve had arthritis I’ve never worked full-time, I only work part-time and I did try going back to work full-time for a short period and it was quite hard actually because arthritis does make you quite tired and as I explained, the medication makes you unwell and I think it would be quite hard going back to being full time now. I’m quite happy to be part-time.

 

Jenna was on a clinical trial for tocilizumab. Each time she went to the hospital for her medication she had to take a pregnancy test because the medication could harm an unborn baby.

I’m just interested in whether or not she’s on birth control tablets at the moment?

 

No they do as part of the trial; they do a pregnancy test every time you go. Once you’ve become pubescent, they’ve told me that they will do pregnancy tests because they have to make sure that they’re not pregnant before they give the medicine. But other than that they don’t make them take birth control or anything but obviously they’d make the parents aware that it’s very serious; you know if she was to get pregnant. Presumably she would have to have a termination I would imagine and that’s just something that you don’t want to go down that road really. 

 

And would, it’s difficult because we’ll try to put it in the future but do you think she’d be comfortable coming to you asking for advice with sex and birth control?

 

I think she would ask advice but I don’t, she’s very, keeps, plays her cards close to her chest about boyfriends and so on, so I don’t think she likes to discuss relationships with me but I think she’s quite sensible and she will find out information if she needs it. She’ll come and ask me for information.

 

Are you aware of information about sex and arthritis that’s available?

 

No not really. I know that one of the drugs that I’ve just started taking, it said that you can have a special wash out if you want to have a family otherwise you’ve got to wait two years after stopping the drug before you can conceive. So it’s quite, obviously it must stay in your body for quite a long time.

 

Jenna was not surprised to learn that she had arthritis because her mum, Karen, has arthritis. She looked forward to getting medication that would help with the pain.

So who was with you when you were doing these tests?

 

My Mum really, ‘cos my Dad’s at work a lot during the day.

 

And did that help? Her being there?

 

Yeah.

 

And did it make a difference that your Mum also had arthritis?

 

I think it might, it made me a bit more confident with what’s going on, ‘cause my mum understood it as well. So if I had any like thoughts or like any worries then she’d be able to like help me.

 

And your Mum was there when you were diagnosed?

 

Yeah I think my Dad was there too.

 

Did it come as a shock?

 

Not really ‘cause I just sort of like realised that I probably did have it.

 

And given that your Mum’s had it, obviously you live with your Mum, I mean do you think that’s had an impact on how you perceived that examination period?

 

Not really. Not much no.

 

How did you feel then when you were told that you had arthritis?

 

I think I was a bit relieved that I found out what it was, and that I could do something about like all the pain and stuff, and I could get like on the medication as well.

 

Jenna enjoys dancing and has won competitions. Her arthritis doesn't normally cause her a problem but her hips were stiff after the last competition.

I do dancing on Fridays and Saturdays. And I like do displays and competitions and stuff. And I walk home from school most days now.

 

Oh how do you cope with the dancing, that’s very cool.

 

I’m okay with it actually, it doesn’t really affect me, but the last competition I did about, was it like two weeks ago? Afterwards my hip started hurting, but we think it was just because of like the extra exercise ‘cause like we were practising all day, and like we like keep doing the same dance and stuff.

 

Oh competition, do you go into competitions?

 

Yeah.

 

Have you won anything?

 

I got a first place in my team dance in March.

 

First?

 

Yeah. 

 

What was this competition about? Was it regional, or was it a school, was it a large?

 

It was cheerleading and there was like 25, maybe more different dance schools competing.

 

Wow.

 

And it was like the UKA or something, I’m not sure.