Vicky

(Audio or text only clips) Vicky has had eczema all her life. Her eczema is less severe now but she still has to take good care of her skin and avoid triggers. She has tried different treatments for her eczema, including moisturisers, steroid creams, antihistamines and light therapy.

Vicky has had eczema all her life. It was particularly severe when she was younger and has become much milder since the age of 14. She has had eczema on almost every part of her body. It has been particularly bad on the inside of her elbows and backs of knees, making it really painful to walk. Vicky sometimes still gets eczema on her eyelids and around her lips. She has also had eczema in her ears which caused scarring on ear drum and has made her partially deaf in one ear. One place she has never had eczema is her back and this is why she chose this as the location for her first tattoo. Vicky’s eczema was made a lot worse when she contracted chickenpox. She was unable to move and it took a long time for her to recover. It also left her with a lot of scars, something which she has since felt insecure about. There are a number of triggers for Vicky’s eczema, some of which she has grown out of to an extent. They include or have included: mixed berries, oranges, pet fur, chocolate, laundry detergents and bath products. Vicky is careful to keep her home clean to limit exposure to dust and other things she’s allergic to, but the cleaning products also agitate her skin. Stress is another big trigger and can become part of a cycle whereby worrying about flare ups can exacerbate the likelihood that these will occur. Vicky finds that sunshine and a warm climate help clear up her eczema, but that a humid temperature makes her skin clammy and very itchy.

Vicky has had a lot of different treatments for her eczema: moisturisers, steroid creams, antihistamines and light therapy. As a result of the steroids used in her childhood, her immune system has been affected and facial skin quite thin. She is now very careful with steroid creams, using a weak version only very rarely. Vicky has seen GP and dermatologists for her eczema, and she also had a one-off appointment at a specialist hospital. However, her experience at the specialist hospital was very negative: she was offered participation in a clinical trial which had very serious side effects and was then fully wet wrapped. Vicky used to hate wet wraps when she was younger as they were very restrictive. Vicky has been hospitalised three times when her eczema has become infected. On the second and third occasions, she was able to arrange for school her work from her teachers to do during the hospital stay. Vicky noticed that she was treated differently by doctors as she got older. When she was a teenager, she would be asked if she wanted a female doctor to examine her eczema at appointments. She also found that doctors directed information more to her as she got older, rather than just to her mum. Whilst Vicky thinks it is good that doctors speak more directly to young people, she found that the tone of doctors could sometimes be accusing and nagging. Vicky doesn’t see a dermatologist very often anymore because her eczema is less severe and well managed. She has a pre-paid prescription certificate, something she first found out about by chance through her local pharmacist.

Other people’s views on her eczema didn’t bother Vicky too much when she was younger, but it has been something that she has felt bad about as she got older. This has affected developing and maintaining romantic relationships and meant that she has sometimes cancelled on seeing friends. Vicky looked into online support groups for eczema when she was about 12, but she didn’t find much and she hasn’t looked since. She thinks that more awareness and understanding about eczema would be good, especially for school children. Vicky also says that it’s important that doctors give plenty of information to young people with eczema and always ask them if they have any questions.

Vicky looked online to find out about getting tattoos when you have eczema.

Age at interview 19

Gender Female

It was a concern cos I have tattoos and I looked into it cos where I have to be careful of what I put on my skin I did research before I got one and they said there’s certain inks might affect it. So like red, reds and green ink that might affect it but as long as it was on an area where your eczema wasn’t too bad, you might be okay. So when I got my first one like I had it on my back cos I’ve never had eczema on my back and it was fine, it was in black ink. And then I’ve got one on my foot, wrist, hip and my thigh that the eczema’s never really been that bad there, well if it was it isn’t anymore. And I haven’t done like red inks and green inks and that [laughs], just in case cos they said there was something about the chemicals and the toxins in it, it could flare it up so I haven’t risked it, yeah.

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One concern for Vicky was how the phototherapy equipment made her feel claustrophobic (fearful of being in small spaces).

Age at interview 19

Gender Female

I remember thinking when I did it, I was like oh I’m gonna get a nice tan, it’s gonna be lovely tan’ and then it was sort of a couple of sessions and I was like arr yeah, it’s not that type, is it. Cos you know the general sunbeds you lie down in them, don’t you, whereas this one you had to stand up and you didn’t have to wear goggles or anything cos it wasn’t the like extreme light from it it was, yeah I think it was, I remember it being, it was really warm and it got quite claustrophobic. It was just like, it is like a box that’s like a sunbed but it’s upright and you have to hold onto a bar that’s on the top and you stand there for about, we did it in 10 minutes sessions but you can do it for like longer if you want to. I didn’t like it for after 10 minutes cos I’d get like too hot and too claustrophobic.

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Chickenpox worsened Vicky’s eczema and has left her with some scars.

Age at interview 19

Gender Female

I had the chickenpox when I was, that was I think it was before I started the steroids cos I know, I think I must have been four or five I think when I got it cos I know it was when I was sort of like in pre-school and school, I got it and I was covered in it. Like I had it on the balls of my feet, on the palms of my hand, everywhere and you couldn’t distinguish between what was chickenpox and what was eczema and I couldn’t move from it or anything, I was really quite ill.

Cos we lived in a maisonette at the time, on the top floor and there was quite a few steps to get up there, I couldn’t walk up and down them, I couldn’t do anything. I couldn’t bend my legs cos where it was so sore behind there so cracked and everything and I couldn’t bend them. So I had to be carried everywhere then.

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Vicky disliked having her emollients and steroid creams put on when she was little. Her mum tried to make it more fun and included her little brother.

Age at interview 19

Gender Female

My mum used to turn it into a game, cos I hated doing my creams, so she’d turn it into a game where I would have to run around and she would try and catch me but I wasn’t allowed to touch anything. And if I touched something that means she’d caught me. So yeah we used, she used to make a game out of it that sort of thing.

That’s quite clever, do you know where she learnt about that?

I don’t, I think she just generally made it up cos I was a little shit [laughs]. Cos I didn’t, didn’t like my creams being done so, and she used to get my brother involved in it as well but like the stuff that, she’d just put the moisturising cream on him so he didn’t feel left out, yeah. That’s what she used to do.

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Vicky has a Prescription Pre-payment Certificate but thinks people with eczema should qualify for free medicines.

Age at interview 19

Gender Female

Where I’ve got a monthly one anyway, it will all get covered under it, so it doesn’t for me but if I did have to pay for it individually it definitely would, cos I wouldn’t be able to afford to do it, yeah. Which I don’t think it’s fair that people with eczema have to pay for prescriptions or people with asthma or anything, cos diabetes get it for free and it’s still a long standing condition so yeah, I don’t.

Yeah. With the monthly certificates for prescriptions, when did you start doing that would it have been straight away?

When I came out of education I started doing it straight away cos I was like, yeah, this, I’m going to have to, so yeah.

Do you remember where you found out about those certificates for prescriptions?

My pharmacist actually told me because well, I’m in there every week [laughs] like they know me in there. And I was doing my prescription once and I said to them, I’m going to have to start paying soon, and she went, Why don’t you do it monthly? I said, I didn’t know you could, and she said, Yeah, you can, and she gave me the website you can do it on. And I didn’t know about it, I didn’t even know you could.

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Vicky talks about all the different parts of her body where she’s had eczema in her lifetime.

Age at interview 19

Gender Female

Yeah the only place that I never had it was my back. Obviously creases were the worst like elbows and the back of your knees, that always used to be the worst, especially when it flared up cos then you couldn’t walk properly or you couldn’t walk at all. so I never had it there, on my back. My face, I used to get it on my eyelids, in the corner of my mouth, well generally just blotchy face anyway but that’s where it would be like scabs and everything and itchy, and the top of my lip as well. And I still get it on my face a bit now, like in the corners of my lips and at the top of my lip, it will go dry. And I hate it, especially now where I’m older, like obviously girls with their faces like, you want your face to look good, so you just constantly cream it and then you’re careful with what make-up you use. But other than that I had it everywhere; like I had it in between my fingers, my wrists, arms, shoulders, chest yeah, everywhere really that I can remember.

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Vicky finds that shaving her legs can help reduce irritation to her skin, but some patches of eczema are too painful to shave over.

Age at interview 19

Gender Female

I started shaving when I was quite young actually because I noticed that on parts of my body that were less hairy it wasn’t as itchy when it flared up so I did start shaving my legs and that when I was quite young. and shaving gel, I just, if it wasn’t too bad I could get away with like a really, a sensitive gel that had like aloe vera and stuff in it. but if not I’d just use my Oilatum gel where it was quite jelly anyway, just put that on and use it as a shaving cream. And it did help when I started shaving my legs because and I told my dermatologist about it and he said, Yeah, people do find that that does help, because then it’s not, the hairs not getting stuck and it’s not irritating it. so yeah, I stared shaving my legs quite young. But there’s, there were some times that even if I wanted to, I couldn’t because where the skin was so sore you couldn’t go over it cos it would just crack it all open but, yeah.

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Vicky remembers it being stressed as she was growing up that eczema isn’t something that other people could catch from her.

Age at interview 19

Gender Female

The main thing that I always remember is that I was always told it wasn’t contagious cos I know that kids at school and like my brother and stuff, there was one time I remember that we went to cross the road and mum told him to hold my hand and he wouldn’t do it because he thought he’d catch it and then she sat him down and was like, No, you can’t catch it, it is just, it’s generally hereditary and environment and stuff like that. So that’s one, that’s the main thing that I remember is that being told about it anyway is that it was, it wasn’t contagious but that there was no guarantee that it might, that it would go away and that you’ll always pretty much have it in some sense or another.

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Vicky was referred by her dermatologist to a paediatric dermatology specialist but she found it a bad experience with wet-wrapping.

Age at interview 19

Gender Female

It was my dermatologist referral, he said cos where it was, my eczema was extreme. He said that we were sort of at a loss of what to do so he referred me to there to say, is there anything you can recommend and they, they agreed to see me. So I remember like my parents made a day out if it, we went up to [city of hospital] and that. And we got there and they literally looked at me and they spoke a little bit about that medication that was on trial that they’d only tried on boys my mum said no to that and then they said, Well all we can do is wet wrap her then. So they just wet wrapped me, literally from neck to ankle. And I was just crying and screaming cos where they’d put it all across my chest as well, so I felt like I couldn’t breath, I had panic attacks, it was horrible. I got on, got outside the hospital and ripped it all off and I remember thinking that oh, that hospital is crap.

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