You were referred to your hospital here, to your local hospital?

Sarah’ Yeah.

And for how long did they look after you?

Sarah’ Well they were keeping an eye on me since I was referred at seven and. But they told me that there was nothing that they could do. Because it wasn’t my local doctor that put me on the tablets and it wasn’t the local hospitals that give me the operation. It was up in London.

At the beginning you had to go London?

Sarah’ No.

Mother’ A few years before.

Sarah’ But my local hospital told me that there was nothing that they could do. They said that. I spoke to the plastic surgeon and he said that he can’t do anything. And so then they, we had, in the local hospital they had like a, a conference thing and they came round and doctors from different hospitals all in the countries and from the.

They explain things and tell me the details. And they ask me if I have any questions and I ask them if I do. But they make sure that before I go out of there that I know exactly what was going to happen or how, what is, if it’s increasing. If they’re increasing the tablets why they’re increasing it or like they will tell me what they’ll do.

And how do, what about the language they use? Do you think they use easy to understand language?

Sarah’ No sometimes they will talk to the other consultants with all big words about medical stuff but, but then they will sort of translate it back to us and tell us what really they said.

And before the operation, just before the operation do you remember how you felt?

Sarah’ It was mixed feelings ’cause I was feeling scared because of an operation but then I was feeling happy that it was, something was going to be done and that I’d. And then I was nervous ’cause I didn’t know what the outcome was going to be like.

Can you tell me more about what the doctor or the plastic surgeon said to you?

Sarah’ That he was going to take some fat from some part of my body and put it into my nose, inject it into my nose to build it out. And he said that he was going to inject it into my forehead and my cheek and my nose to make it more evenly. But he did say that it, it would have reduced, that the fat would have gone, in like, in a certain amount of time. Like it has gone down a lot now. When I first came out of the operation it was like a really round, big thing [laugh]. But now it’s gone down normally. And I don’t know what else like.

Your medical team now is your consultant in London?

Sarah’ There’s the consultant in dermatology, there’s the consultant in rheumatology, and there’s the plastic surgeon, maxifacial, ear, nose and throat, and who else?

And thermography person [laugh].

How did you feel about your medical team, all these?

Sarah’ Sometimes I’I am thankful because, for London, because when they told me over here there’s nothing they could do I was a bit upset. But then

Has your condition affected your schooling in any way, I mean missing school or?

Well when I was in comp going to the local hospital it didn’t really affect my schooling. But when I goes to London it takes a day, I think I’ve got to take off to go all the way up there. And I do miss a bit of work especially when I had the operation. ‘Cause I’m in college at the moment all my assignments in. I’m behind on them because I had a week off, well I had two weeks off to look up. One week up there and one week to recover.

How was your nose, how was your face before the operation?

It was, my nose was a bit worse. It’s tend, it’s straightened my nose a bit. But the inside by there, is still. It is indented a bit. And this. When I was younger I didn’t really notice because when I was in primary everyone just, just didn’t really notice ’cause I was brought up with them and just. We was all in like a little group.

But then when I started going to [name] Comprehensive School that was the time like when everyone was different people, didn’t know me and they would look at me and that. And it was people that I didn’t know that would ask questions. And to be honest I didn’t really know what to say back to them because I didn’t know much about it myself at the time ’cause it was only recently when I got referred.

Was anybody unkind to you?

Yeah it was a few name callings but I just rose above them because, I don’t know [laugh].

How did you feel at that time? How did you cope with that?

I did used to feel upset and just think, ‘Why me, why couldn’t it be anybody else?’ But then I realised that there are people with worse problems than what I have got. And those are just the problems I’ve got to deal with and [laugh].

Tell me more about how you felt at that time. And did you lose some friends and that kind of thing.

It didn’t start when I was seven. It started when I went, when I changed schools from primary to comprehensive, to secondary school. ‘Cause it was new people that I didn’t know and they was. They didn’t know me and they was looking at me. And I just. I did feel like, a bit like pushed out. I, because they was looking at me so much then I would think that they were, like if somebody looked at me I’d automatically think that they were looking at my nose because it’s the first thing that you see. And’

Carry on.

And when I was in school there were a few people that did say nasty comments but my friends would just cheer me up then and just change the subject and just move like, you know, just move on.

How did you feel about that?

I’d feel upset and I would sometimes cry but now it doesn’t bother me at all.

But at that time.

But at that time it was new to me and it. It was new to me and I was just getting used to it myself and then I’d had people then saying stuff and it wasn’t nice.

Tell me more about how you felt at that time. And did you lose some friends and that kind of thing.

It didn’t start when I was seven. It started when I went, when I changed schools from primary to comprehensive, to secondary school. ‘Cause it was new people that I didn’t know and they was. They didn’t know me and they was looking at me. And I just. I did feel like, a bit like pushed out. I, because they was looking at me so much then I would think that they were, like if somebody looked at me I’d automatically think that they were looking at my nose because it’s the first thing that you see. And.

Carry on.

And when I was in school there were a few people that did say nasty comments but my friends would just cheer me up then and just change the subject and just move like, you know, just move on.

How did you feel about that?

I’d feel upset and I would sometimes cry but now it doesn’t bother me at all.

But at that time.

But at that time it was new to me and it. It was new to me and I was just getting used to it myself and then I’d had people then saying stuff and it wasn’t nice.

Were you six, seven?

Sarah’No I haven’t had them since then. Since I’ve been on the methatrexate, since I’ve been on, thirteen yeah.

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].

One of the consultants said that she normally puts people on the pill who are on these tablets for the contraception but, I’m not [laugh].

Were you with your mum when she told you that or?

Sarah’Yeah and then the lady took me into the other room then and asked me discussed with me and asked me what I wanted to do.

Mother’Boyfriend and things like that.

Sarah’Yeah. Like if I had a boyfriend and if I was sexually active or anything.

So they tried to find out?

Sarah’Yeah.

In order to prevent any kind of

Sarah’Yeah.

‘pregnancy that.

Sarah”Cause they said it wouldn’t be a nice experience for me to go through because of then being to keep the baby ’cause they would be really deformed.

Ok so they made you aware of that’

Sarah’Yeah.

‘from the very beginning?

Sarah’From the beginning.

Well the consultant that I went to see up in London he told me that there is something that we can do. And the, a plastic surgeon can change your nose and make it ’til it looks normal. But it didn’t really. It was like. I didn’t really believe him at first until I did see the plastic surgeon myself and he told me.

Why?

Because my local hospital had told me that they couldn’t do nothing. I honestly did think that there was nothing that they could do. But then when I spoke to the plastic surgeon up in London he told me that they could do something about it.

And before the operation, just before the operation do you remember how you felt?

It was mixed feelings ’cause I was feeling scared because of an operation but then I was feeling happy that it was, something was going to be done and that I’d. And then I was nervous ’cause I didn’t know what the outcome was going to be like.

Can you tell me more about what the doctor or the plastic surgeon said to you?

That he was going to take some fat from some part of my body and put it into my nose, inject it into my nose to build it out. And he said that he was going to inject it into my forehead and my cheek and my nose to make it more evenly. But he did say that it, it would have reduced, that the fat would have gone, in like, in a certain amount of time. Like it has gone down a lot now. When I first came out of the operation it was like a really round, big thing [laugh]. But now it’s gone down normally.

And what, and what did they do?

They took fat from my stomach through my bellybutton and injected it into the right side of the nose and my forehead and they built the cheekbone, like they put the fat in the cheek as well. And I was in hospital for a few days.

And my nose was well really big and my sides came out really much as well but it’s gone down a lot now. But I’ve got to have that operation repeated every so often because the fat goes. So I’m going up soon for another operation. I’m on the waiting list again to have that repeated. And later on once they’ve, are successful, once it’s like they’ve succeeded in doing that. And they’re happy with the size and shape that it’s at. I’m going to have cartilage from my ear or my ribs placed into the nose to make the nostril, to shape the nostril and bridge the nose back up. And I’ll either have. The guy that, they’re going to build the bone back up in my forehead or put a metal plate inside.

So you will have several operations?

Yeah.

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].