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Sarah - Interview 29

Age at interview: 16
Age at diagnosis: 7
Brief Outline: Sarah was diagnosed with a localised form of a skin condition called morphea in which there are well demarcated plaques of fibrosis restricted to the skin. In her case this affects the right side of her nose and the top of the right side of her forehead. Recently she has had surgery in which fat from her stomach was injected into the right side of her nose and her forehead and the cheekbones. Doctors have explained that she will need several similar operations before they reconstruct her nose an
Background: Sarah is a full-time student. Lives with her mother and father. Ethnic background/nationality' Welsh.

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At the age of 7 Sarah was diagnosed with a localised form skin condition called morphea in which there are well demarcated plaques of fibrosis restricted to the skin. In Sarah's case this affects the right side of her nose and the top of the right side of her forehead. It started with a line going down her nose and her GP referred her to the local hospital. Doctors explained to her and her parents that morphea is an 'inflammation of the body' and said that basically they couldn't treat it. She was referred to a team in London and she was put on steroids, methatrexate and folic acid. Currently she is on methatrexate and folic acid. 

At the age of 13 years she was told that it was possible to have surgery to correct the right side of her nose and forehead. Sarah had to wait till this year, 2007 when she was 16 years old to have her surgery. Initially Sarah had mixed feelings about her operation; on the one hand she was happy that something could be done about her condition but on the other hand she was also scared about the outcome of her surgery. What the surgery team did was to remove fat from her stomach and inject it into the right side of her nose and her forehead and the cheekbones. Sarah remembers that after her surgery her face looked really big but the swelling has gradually gone down. Sarah has been told that this surgical procedure will need to be repeated several times until enough fat is retained in those parts of her face that have been affected by the morphea. After that she will have further surgery to shape the right-side of her nose with cartilage from either her ear or her ribs to bridge the nose back up. Her team in London has also told her that they will try and build up the bone in her forehead or put a metal plate inside. 

Sarah continues to have regular appointments with her specialist team in London which consists of her dermatology consultant, a rheumatology consultant, a plastic surgeon, and a maxi facial consultant/ ENT (ear, nose and throat) consultant. She also has thermography (a test that shows the blood flow in her face) and ultrasound tests every time she goes to London. These tests have revealed that morphea is still active in her forehead but no longer on her nose. 

The prospect of more surgery does not worry Sarah and she is happy and confident about it because she knows that doctors can do something to help her. She is already on the waiting list for her next operation.

 

She needs regular blood tests to monitor her liver function because the drug she takes can damage...

She needs regular blood tests to monitor her liver function because the drug she takes can damage...

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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].

 

At the age of thirteen her consultant told her that she couldn't get pregnant while on medication.

At the age of thirteen her consultant told her that she couldn't get pregnant while on medication.

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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.

 

Until she was 13 she didn't think that plastic surgery would be possible. She found out that it...

Until she was 13 she didn't think that plastic surgery would be possible. She found out that it...

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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.
 
 

Describes the plastic surgery she has had, and will have, for her rare skin condition.

Describes the plastic surgery she has had, and will have, for her rare skin condition.

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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.

 

Talks about what it is like to see several specialist teams in different cities. Feels most...

Talks about what it is like to see several specialist teams in different cities. Feels most...

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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
 

Her condition affects her facial features and when she moved schools some classmates bullied her...

Her condition affects her facial features and when she moved schools some classmates bullied her...

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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.

 

Her condition affected the shape of her nose and forehead. Children at her new school kept...

Her condition affected the shape of her nose and forehead. Children at her new school kept...

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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.

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