And I went into [hospital] because they wanted to sort out the methotrexate problem, because they said, ‘You can’t come off it because we don’t have anything else to give you. And I said, ‘Well I’m not taking it any more because ” It went on for about a year the sickness thing and nobody really cared. I mean, I cared and my parents cared but the doctors they weren’t really too bothered. They said, ‘If you’re not on it then you know you’re, you’re not going to be healthy enough. And, I didn’t care. I didn’t care if I couldn’t do anything, I just didn’t want to be sick any more.

So I went in and various different doctors came to talk to me ‘cos I was under Professor [name] at [hospital] and, and she has a huge team and they all came to talk to me, all of them. And then she came as well so, you know, the big top dog, and she spoke to me and I said, ‘No, I’m not taking it. You, you can’t make me take it because I don’t care if I’m, if I’m under 16 I’m, I’m not going to take it. And I just said, ‘No. And they said, ‘Well we’ll give you anti-sickness tablets. And I had tried those, they didn’t do anything. I said, ‘But they don’t work so I’m not taking it. So they eventually [laughs] sort of, they listened to me. I mean it was about three weeks I was in there and I had intensive physio and I had hydrotherapy in the morning and then at lunchtime, I enjoyed all that, that was all good.

And then they’d put me on indomethacin which I’m still on now, which is I think the best drug for me. I don’t know how it works for other people but it got rid of the stiffness, it got rid of the swollen joints and I could get up in the morning and do whatever I wanted straight away. It got rid of all of that. It wasn’t so good of getting rid of the sort of, the general day-to-day pain. I still get localised joint problems but it took away all those sort of feelings of, ‘Oh, I can’t do it today. And that was great, so I was really glad I put up the fight to get off methotrexate because it was really worth it.

Well I have chronic eczema. It began to get worse my teenage years and I am managing it well now. But over the years I’ve had lots of different types of treatments for it. And but most now I have kind of narrowed down to a kind of things that I know work for me and things that don’t, and I know that’s what work for me. And if, and if I go to a new doctor and they try and give me something else then I say, ‘Well no actually in my experience I know that hasn’t worked for me.

On a day to day basis my condition it’s ‘ in terms of how it makes me feel about myself, it’s more it’s a very kind of outward thing like people can see that my skin around my eyes is really red and raw. Sometimes I have eczema around my mouth and that leads to infections and I have to have antibiotics to target the infections because I get spots and things around my mouth which isn’t very nice.

And sometimes I worry that I can’t that people are going to look at me. And I can’t smile properly when my eczema is really bad and I have to like stop myself from laughing and that makes me feel quite down. And I felt you know that’s kind of comes and goes since I was at school really and that still happens occasionally.

But when my eczema is really severe and I’m scratching all night and just feel like there’re ants on my body, I do take antihistamines.

Which just calms everything down. But when I say that to doctors, they say. ‘Well we don’t treat eczema with antihistamines. But that seems to be their line on it but it helps me, so And I’m used to taking them because I have mild hay fever anyway so it kind of you know ‘ I found that it really helps. In addition to that I’ve had different types of steroid creams, steroid creams with antibiotics in and ointments for some parts of my body, and creams for the others. Paraffin-based ointments that are horrible and make you sweat and they just make my skin worse. And then one particular kind of range of like lotions and soaps and things that you can get on prescription but are really, really mild and they’re oatmeal based and that was just amazing. Changed everything for me [laughs].

Have you tried any alternative or sorry complementary medicine?

Well I’m quite open to that idea. I think the fact that I am very I know that it’s not it’s ‘ there’s something I don’t know what it is but aggravates my eczema and causes it ‘ but I know that there’s certain things I can do to help it. And I know that my diet’s a big thing part of that and you know just drinking good water. So I see that as kind of complementary.

Yeah. I mean it’s amazing, it’s amazing the drug treatments. I would not be sitting here now if I hadn’t started triple combination within the space of one year. Yes it keeps the virus minute within my body, but it’s still there and you don’t know how long they’re going to work for.

Initially on the drug treatments I had side effects, skin rashes, complaints, dizziness, tiredness, they eventually wore off as time went on. But they still don’t know the long term side effects of efavirenz which causes sleep disturbances and you know weird dreams and’

And do you get that?

Yes, very much so.

What’s that like?

Just crazy dreams, I can have six, seven dreams in one night, which can be a little bit weird.

Is that worrying or?

I’d, I’ve always dreamt, dreamt a lot as a kid anyway. I always had vivid dreams as a young boy so. Yeah not nice but you know, it’s a small price to pay though. I mean there’s countries not even able to afford the drug treatments I’m on. So you know it’s not something I moan about, I’m very grateful for being given the opportunity to live.

Sarah’Oh yeah. First when I was on the steroids my appetite did increase a little bit and I did go a bit bigger. And then as soon as I was taken off them my weight went back to normal because I am quite lucky I can eat and eat and eat [laugh]. And nothing.

What about your blood test?

Sarah’When I first went on the steroids and the methotrexate I had to have blood tests every week. And then it went to every fortnight, every three weeks and then every month. And now I have them every six weeks which they are looking at my liver function because the tablets that I’m on they can affect my liver in some way and. But at first I didn’t like injections. I didn’t like to, like them but now they’re just second nature. I don’t even notice happens when I’m having them [laugh].

Anything else that, about side effects of?

Sarah’It’s not really a side effect but on the tablets that I’m, that I’m on they, what’s it, reduce my immune system is it? They reduce my immune system so I am more vulnerable to pick up colds and viruses. And that’s why I take the folic acid every day to boost up my immune system to fight bacteria. That it, bacteria?

Ok. What about drinking alcohol?

Sarah’Well they told me that I can have.

Mother’In the beginning you weren’t to touch alcohol really at all.

Sarah’Well at the beginning I weren’t allowed to touch alcohol at all. They told me that it could affect my liver and.

Mother’No pregnancies.

Sarah’And you can’t get pregnant on these tablets at all because it can. The baby that’s growing inside will be deformed in some way ’cause they are really strong. And, but now they said that I can have on occasions a little bit of alcohol but not to the extent that you are really drunk [laugh].

We went back to [name] Hospital and I was put on the pain relief diclofenac. And I remember it was quite a long time before, you know, I was still in a lot of pain. And they decided that they’d put me on methotrexate as a, a new method to try and relieve the pain and get my, get me back up to remission. And I was on that for quite a long time, for about three years. And I can remember that it wasn’t really working and I was still in a lot of pain and I was, I was managing to keep at school but it was increasingly difficult because I wasn’t sleeping at night.

And I remember they invited me to this conference, look at difficult case studies and try and find a solution. And that’s when they put me in contact with [city] ’cause they recommended that the healthcare, the doctor, Dr [name] there was a specialist there, the specialist team.

So and I can remember going for the first consultation. I was really white and pale, really struggling to walk and I [laugh], for some reason I thought that I wasn’t poorly enough to go to [city] ’cause I thought it was a children’s hospital and there would be all these poorly people. I remember the first consultation. It was with Professor [name], I think his name is. And they transferred my care over there. And I remember and there was, they continued with methotrexate and I think I went on diclofenac as well.

And that was in 2003. The methotrexate still wasn’t working. It was still on and off 2003/2004, still not in remission. I was still really poorly. And then while it was really bad and, you know it was 2004, I had the steroid injections in the ankles. And had a series of drips, steroids as well. And then I went back on steroids in tablet form. I think it was 2003. And that wasn’t very good at the time because being 13/14 at school all my face was swollen up and it was not very nice for all my [laugh] friends and gradually seeing my face blow up ’cause I was on such a high dose.

And that kicked it into remission in a way but it was still present, still had a bit of pain. And then eventually they, we found out about Enbrel and going onto Enbrel. And they applied for funding and I got it. And then they started me on the Enbrel and I still had methotrexate at that point but it was getting that the methotrexate was just making me feel ill and taking over. And every Friday night I just felt terrible which wasn’t very good ’cause I had Scouts on Friday night. And eventually I refused to take it any more ’cause I was just feeling so terrible. So the Enbrel was working by that point and it was getting into remission. And it was a very gradual process but by 2005 it was starting to, you know, into full remission. It was a lot better. I wasn’t, started not to notice it as much. Started to be able to do what I used to be able to do walking, biking to school. And I’ve been in remission hopefully now for two years. So hopefully with the new medications are working.

And I have to do injections twice a week.

You do it yourself or you need to go to the hospital?

I do them myself. I have, I think it’s every six months I have a delivery from Healthcare at Home. They deliver me with the supplies of needles, vials of injections. Then I mix it up myself, the water and medicine vial and then I do it with a pen every Monday and Thursday.

What has it meant to you to feel better now?

It’s just meant my independence is back because when I was relapsed in 2000 I started to become independent at 13. And not being able to just go out and think, ‘Am I going to be able to do t

Yeah. Things like my mum is always on me because you know me I don’t like taking medicine, medication. My mum’s always reminding and it’s something that I can actually go without. I can go without medication but just to stay safe I take it. So I could stop my penicillin and folic acid for a year or so. But then things might start to get worse so I just take it to be safe. So I mean that’s one.

So you forget to take your medication or?

Sometimes yeah I forget like it’s something that I don’t really like. I don’t push myself to do because at the same time even though I should but it’s not something that because like I said because sickle cell it doesn’t really affects me that much now and just a little. But ‘

So I could actually go without medicine. But I just choose to take it just to be safe. So I just take just so just to avoid having a crisis or something. But my mum always you know persuades me to take my medicine just to be safe.