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Eczema (young people)

Getting a diagnosis and eczema changing over time

Time of diagnosis

A lot of the people we interviewed told us they had eczema since they were very young. Often they couldn’t remember a time without eczema as it had “always” been part of their lives. For some people, it was just “normal” but others could remember times when they’d missed out on things other children around them were doing because of their eczema. Although those who’d had eczema since they were a baby or toddler often couldn’t remember being diagnosed, they may have heard stories from their parents about it.
 

Aisha’s parents took her to see a GP when she was a baby. At first, they were told it was cradle cap and nappy rash but she was later diagnosed with eczema.

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Aisha’s parents took her to see a GP when she was a baby. At first, they were told it was cradle cap and nappy rash but she was later diagnosed with eczema.

Age at interview: 21
Sex: Female
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I had eczema when I was a baby. My mum said it just sort of started with, you know like nappy rash and cradle cap, and she thought it was just normal cos I was her first, so she was like, "Oh what is this?" And so the doctor just sort of sent me away and said, you know, "Put a bit of E45 on it and it'll be fine."  But then it sort of started getting more… just the normal symptoms of eczema you know, sort of really dry and sort of when I was scratching it, it was sort of bleeding and stuff, and so then the doctor told my mum that it was eczema and, I think, I mean it sort of cleared up quite well because I had a bit of like very, very sort of dilute steroid [laughs] and it sort of cleared up fine. And then, well I can remember it sort of being, I think around… six/seven'ish, is when it sort of started to come back.
Other people received an eczema diagnosis when they were older. This sometimes came as a surprise because they thought of their skin as ‘normal’ before. Jessica really struggled to get a diagnosis of vulval eczema (eczema on the skin around the vagina) when she was 20 years old. Doctors thought her symptoms could be something else, such as a sexually transmitted infection. Jessica learnt about vulval eczema after looking up her symptoms online, but found it was frustrating trying to convince her GPs that this was the correct diagnosis (see ‘Where on the body? Eczema and different areas of skin’).
 

Himesh learnt that he had eczema when he was admitted to hospital for an infection at age 10/11.

Himesh learnt that he had eczema when he was admitted to hospital for an infection at age 10/11.

Age at interview: 17
Sex: Male
Age at diagnosis: 10
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I think I had an infection first so I ended up in the hospital and one of the doctors said, I think they said “This is due to your eczema” and I was, obviously I, I didn’t know I had eczema at that time until the doctor said, so yeh I think that’s when it started.

Hmm. How did you feel when the doctor said that?

I didn’t know how to feel because I think at that point I didn’t know what eczema was, if that makes sense, so yeh.

And what happened next, did the doctor explain a little bit about it?

Yeh explained like you have a skin condition for it, you’ll have to put creams and stuff, which I didn’t mind at the time because I thought that’s alright, if that makes sense, but as you, you know, get used to, to the routine and stuff it gets kind of annoying I guess ‘cos it take up a lot of time, so yeh.

Hmm. Hmm. So what did you think the symptoms might have been because you said you had an infection, was that a skin infection?

Yeh it was I think because I probably scratched myself that’s why something probably went into my immune system and then it triggered an infection which was really bad because I had to stay overnight in the hospital. I think that infection I had to have medicine through my veins I think it was, so yeh it was pretty bad as I’d never experienced anything like that, I used to be a really healthy kid really so yeh.
 

Jessica saw many GPs and did her own research before being diagnosed with vulval eczema and receiving specialist treatment.

Jessica saw many GPs and did her own research before being diagnosed with vulval eczema and receiving specialist treatment.

Age at interview: 20
Sex: Female
Age at diagnosis: 20
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Over like summer, I started having like a really itchy like vagina. So now I sort of have vulvar eczema which is actually quite unusual. And obviously at the beginning with sor-that like—cos it’s, that’s really hard to go through the NHS because it’s quite like a gynaecological/dermatological problem, so no one really knows where to put it. And obviously, at the beginning they thought like, had an infection. Or like an STI and I’ve had like so many tests until Yeah, I was like telling my mum about it and she got quite frustrated, went to like a private doctor who finally diagnosed it as vulvar eczema and has given me like steroid cream and stuff. 

So, like, when you like Google outright ‘itchy vagina’, the o-, first thing that comes up is you probably have an infection… that sort of thing. Yeah, I never really thought I had an STI, that seemed unlikely Yeah, for a while I was just sort of, sort of like, oh, I don’t really know what I have, but like oh they’ll figure it out. I am taking all these tests like, sort of thing. I’m pretty sure it was the Internet that first gave me the idea that I probably have eczema.
Eczema changing over time and ‘re-diagnosis’

Some people diagnosed as having eczema when they were young found that it had gone away or affected less of their body for a while as they grew up. This made sense to them at the time as many people had heard that children “grow out” of eczema as they get older. Anissa, Vicky, Evie and Sarah had heard of ‘the seven year rule/theory’: the idea that eczema ‘changes’ (either improves or gets worse) in seven year cycles. For some people, their eczema became less severe as they got older but for others it had returned, often during puberty. Aisha described her eczema as coming “back with a vengeance… like the bad guy in a movie who just doesn’t die.” 

Eczema returning or becoming worse after a break of months or even years could be particularly tricky to cope with if the person was no longer in the habit of using eczema treatments or avoiding triggers. When eczema came back, got worse or affected new parts of the body, going to the doctors could be like a ‘re-diagnosis’. Cat’s eczema returned after many years whilst she was at university. She had to register at new GP clinic in order to see a doctor and be prescribed eczema treatments.
 

Cat talks about the widely-held belief that children “grow out” of eczema.

Cat talks about the widely-held belief that children “grow out” of eczema.

Age at interview: 24
Sex: Female
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It's more common in sort of younger people, so everyone just thinks you grow out of it, which I thought I had [laughs]. Like, “Arr, you should, you'll just grow out of it”, which I think that’s what a lot of people do think. But you don’t, so I think yeah, I don’t know, I think a lot of people probably associate it with sort of little kids and stuff like that. So, I think yeah that’s sort of quite difficult but, when you’re sort of, especially when you had that period without it and then suddenly it sort of comes back, it's quite difficult, almost like if you'd grown up with it, almost be easier to sort of cope with. But  yeah I think everyone's sort of perception is that everyone, you just grow out of it, and a lot of people do but at the same time – it can just sort of come back so.

 

Sarah’s eczema cleared up during secondary school but suddenly returned at university.

Sarah’s eczema cleared up during secondary school but suddenly returned at university.

Age at interview: 23
Sex: Female
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What was it like when you sort of first noticed it coming back in university?

It was like unusually really bad on my face. So I got very, very flaky and very red, like quite swollen round my eyes which I still get now.  And then it was just like on my hands and my, yeah, my elbows and stuff.  And it was really bad. And then because I hadn’t had it for ages, I didn’t have the right medication for it and I hadn’t like got a GP or anything. So then I had to kind of find the GP and get all the medication I needed and then start managing it. 

But I think it was because of like the change of environment and then also the quality of accommodation at the university halls which has like a really big impact. And the quality of the water. That’s what I think was why it suddenly became worse. And alcohol consumption [laughs]. Which - yeah.

Could you say a bit more about those factors? About the sort of --

Yeah.

-- environment and different things you were doing at university?

Yeah, so I was definitely, when I was at uni I was probably drinking more than I’d been drinking at home. I was using like different water. So I moved to a different part of the country where the water quality was different and I think that had a big effect on, like on my skin. And then, I can’t think, like because I hadn’t had it for a while I think I was doing things I wouldn’t have done if I’d known I was gonna get eczema. So like using wrong detergents on my clothes, using like wrong fabrics to wear and all things like that.
 

As she has got older, Lizzie’s eczema became milder in terms of symptoms and the areas of the body affected.

As she has got older, Lizzie’s eczema became milder in terms of symptoms and the areas of the body affected.

Age at interview: 19
Sex: Female
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I mean like over the long run it was really, really bad when I was a child. So, like when I was below six years old it was really, really bad. And it's slowly gotten better as I've like become 20. But like yeah particularly between like six and 14, 15 years old it was bad and I did have these massive flare-ups, and it would be constantly bad, like nothing I could do to get rid of it. And now it's more minor than that, I still have places where it comes up a lot frequently, and sometimes there are pieces of eczema which are constantly there but it's not as bad as it was. Like it's not as itchy, it's not as red, it doesn’t flare-up as often, but there still are times when I do have these flare-ups which are particularly bad. Mainly I used to have it pretty much all over my body, but now it's become more localised. But what I haven’t, I never had eczema on my hands until I turned about 16 or 17 years old, so that’s more of a recent thing. But yeah, I used to have it on my shins and on my feet and my hair and on my face, but that has definitely improved cos now it's more just legs, arms and hands basically.
Information given at diagnosis

Several people talked about the information received with the diagnosis of eczema. For those diagnosed when they were young children, their parents had usually been given information by the doctor. This information wasn’t always aimed at, or necessarily passed on to, the child as they grew up though. It meant that some young people understood how to use their treatments but didn’t know much overall about their skin condition (see ‘What causes eczema?’ and ‘Eczema triggers: what can make eczema worse?’). Some people could remember being told certain things about their eczema. For example, Vicky remembers being reassured that eczema was not contagious (spread to others). Aisha suggests that giving a leaflet to all people when they are first told they have eczema would be good, to cover basic information about the condition.
 

Anissa’s doctor directed information about eczema to her parents when she was little.

Anissa’s doctor directed information about eczema to her parents when she was little.

Age at interview: 20
Sex: Female
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What do you remember knowing about eczema as a child?

Not a lot. Obviously they direct everything to your parent. Which is a problem because once they’ve started directing it to your parent, they feel like you know what they’ve already told your parent, as an adult. So they don’t retell you the things they expect you to know, even though obviously you don’t know.

But I just, I just knew that I was in pain and that I had to be bandaged up. I didn’t really understand what it was wrong with my skin. No, like, I was never really told anything. I was just, lived through it without any information. Just being told, “Don’t scratch and do what we say.” 

So really when you get to an adult they should, or a teen, because teens do have comprehension [laughs]. But like, they should be telling you exactly what your condition is, as if it was from new to start off with. Because the understandings different now and you can fully comprehend what it is, and they should be telling you that. But they just believe that as a child you understood and you’ve carried on.
 

Katie-Lauren was diagnosed as a baby and only recently learnt about eczema in more depth from a nurse at her university health centre.

Katie-Lauren was diagnosed as a baby and only recently learnt about eczema in more depth from a nurse at her university health centre.

Age at interview: 19
Sex: Female
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And you said that meeting the nurse at the health care centre at university for you now, that was the first time someone had ever explained what causes eczema and what it is?

Yeah. It took 19 years, but someone finally explained. I think doctors just want to give you a cream and move onto the next person. But she, she drew up a diagram and everything and told me and it’s the first time I understood. Because no one else had ever explained it to me before.

So your parents had never sort of talked you through when you were younger or, at all?

I think they tried to, but I don’t think they really knew why I had it, because none, no one else in my family has it. So it, I guess, it’s just kind of odd that I had it and they tried, they did try, like my dad would come home with like leaflets and stuff about eczema, but they were really hard to read and stuff. Whereas she like talked me through it and drew me a diagram.
The future with eczema

There is no certainty about what the future holds with eczema. This gave some people hope that things might get a lot better with time, but it could be frustrating and disheartening for others. It can be difficult for young people to hear that eczema might be something they live with for the rest of their life (a chronic condition). Some people remember feeling disappointed when they heard that there is no ‘cure’ for eczema and that they would need to learn how to ‘manage’ it. This includes seeing healthcare professionals, like GPs and GP clinic nurses and sometimes dermatology doctors and nurses.
 

Dr McPherson talks about growing up and getting older with eczema.

Dr McPherson talks about growing up and getting older with eczema.

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Why does eczema clear up for some people as they get older, but not for others?

It's a really important question. And we really, if we had the answer to that we might understand more about eczema in general. There's various theories, and it's probably going to be complex, just as eczema is complex. It's probably going to be a combination of changing your skin barrier as you get to certain ages, changing the way your immune system works as you get older. Possibly exposure to certain infections on the skin, which might change the way that your immune sort of system responds to things. We don't really know. But I think it's only, it's also probably only in a, you know, minority of people that their eczema completely clears up. Most people will still have prone-, prone skin to developing for instance in the future hand eczema, and also these other kind of allergic atopic conditions such as hay fever and asthma. So really we should think of it more as a chronic life-long condition. And what we want to do is try and prevent it being bad, you know, as early as possible. Rather than, you know, promising everyone their eczema is going to clear up. Because I think that's often-, the young people I look after, that's often when they feel quite despondent, when they get to their teens and they've still got eczema, yet they were told all through their early life that it was going to clear up. And probably only, you know, only a minority of people their eczema completely clears up. And if you've still got it in your teens, you're likely to have it then ongoing into life. Not that it can't be controlled, but that you are going to have ongoing problems.
Eczema can change over time, for example affecting different parts of the body or lead to other health conditions like keratoconjunctivitis (an eczema-related condition affecting the eyes) and interact with oily or acne-prone skin. 
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