‘Why do I have eczema?’ is a question a lot of the young people we interviewed had thought about. Many knew their skin was often drier and more sensitive than other people’s skin, but they often weren’t sure why. A lot of people who had grown up with eczema couldn’t remember the causes ever being explained to them. Doctors may have told their parents but they may not have understood at the time. Unless they had since been told by a doctor or found out about it online, many young people didn’t know about the underlying causes. Sometimes they felt there just wasn’t enough information made available to them about causes and that it could be confusing when they looked it up themselves. See also ‘Getting a diagnosis and eczema changing over time’.
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.
Vicky remembers it being stressed as she was growing up that eczema isn’t something that other people could catch from her.
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
Sex: Female
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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.
Having had eczema since she was very young, Alice hasn’t been given as much information about the condition as she would have liked.
Having had eczema since she was very young, Alice hasn’t been given as much information about the condition as she would have liked.
Age at interview: 22
Sex: Female
Age at diagnosis: 7
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I probably would have preferred to have some information about what eczema is ‘cos I mean I know I’ve never bothered to look it up myself but I don’t think anyone ever actually explained to me what it is really and what can set it off and what is associated with like, is it associated with asthma and allergies and stuff like that, I don’t really know these are just things that I think.
The causes of eczema are complex and are not the same in all people with the skin condition. Research into understanding the causes of eczema continues. Thinking about the different layers and functions of the skin helps us to understand what’s happening in eczema. Normally the top layer (the epidermis) of the skin helps keep in moisture and natural oils. However, with eczema, there are changes in the surface of the skin which means it doesn’t work as well as a barrier. This makes it difficult to keep this moisture in, making the skin dry. Things which irritate the skin can add to this problem by damaging the skin further and make it more likely that the skin will react badly to any irritants. The immune system (which helps resist against infections) works differently in people who have eczema, by ‘over-reacting’ to normal things in the environment. A few people had heard about the ‘hygiene hypothesis’ – the idea that not enough exposure to germs in childhood limits the normal development of the immune system.
Dr McPherson explains about the skin and how this functions differently in eczema.
Dr McPherson explains about the skin and how this functions differently in eczema.
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Okay. So this is a cross section magnified, of normal skin. And you can see all these cells here are all squished together nice and tight. This is a hair coming out, so you can see how small these cells are. If you think about like a brick wall, that's a normal, that's what normal skin looks like, the bricks are all nice and tight together. Now if you have a condition like eczema, so you've got inflammation, the cells become a little bit more gappy, the barrier function's not so good, for various reasons. So that means you can lose water. And that's what makes your skin dry, because you're losing water from your skin. And you can also have things like infections, and allergens - not very clear - can access the skin more easily. And that means that they come through and they're more exposed to immune cells. And that's how you can develop over-reactions or allergies to certain things. So we know that, you know, the first thing that really needs to be done is to help keep the barrier function good. And that's with kind of regular emollients. And reduce the inflammation, because that can also kind of lead into a vicious cycle of all these cells getting inflamed and spreading apart. And it means there's more immune cells around, if there's lots of inflammation. So that's done with topical corticosteroids. So that's why we use emollients, to help with the barrier function. And the corticosteroids to help with the inflammation in eczema.
It took many years of living with eczema before Laura learnt about why her skin was that way.
It took many years of living with eczema before Laura learnt about why her skin was that way.
Age at interview: 22
Sex: Female
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Do you recall when you were younger what you knew about eczema, the sort of causes of it and what it actually was?
I think that my Mum probably told me about a bit about it. But I never really understood the science behind it I don’t think until, one of my, this local doctor here, when I was late teens, explained like why it was cracked skin an d like what was happening with the different layers of your skin [gestures with hand to layers]. And how, if you do one thing how it will affect it. For example, using the actual soaps that you buy, you know normal soaps. And how, if you try and moisturise and protect it and things like that, how it will improve and sort of, and that was good because it puts into like, you're like, "Oh OK that kind of explains it," rather than it being a sort of off, this subject that you're not really sure about.
The exact reasons why some skins are prone to eczema are not fully known. It’s also unclear why some people’s eczema goes away as they get older, but stays for others. Some people we talked to had heard about scientific research looking into possible reasons for this. Genetics was also mentioned by people who knew other family members also had eczema or a history of other skin conditions like psoriasis. Some were the only person in their family to have eczema. Jessica’s vulval eczema came “out of the blue” at age 20 as neither she, or anyone else in her family, had any eczema before.
Laura has looked online for more information about eczema causes and recently came across some research into the balance of bacteria.
Laura has looked online for more information about eczema causes and recently came across some research into the balance of bacteria.
Age at interview: 22
Sex: Female
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Well I read about recently and so, like I might be wrong, but I think I've read about this recently that there's a certain type of bacteria on your hands, like you know there's so many bacteria and things on your hands, and germs, and there's something like one in ten thousand people have this certain bacteria, whereas every atopic asthma, sorry eczema sufferer has. So, everyone who has eczema has a certain type of bacteria a lot more, it's a lot more common. And then things like itching moves it around so it spreads it. Although, when I read that I then thought, 'Well so does moisturising,' [laughs] so it's like, what can you do? So yeh I read that recently and I think… but then you can't really, you have to use your hands so.
Evie chooses to see a dermatologist at a hospital that trains medical students and it was here that she heard about some research into genetics and eczema.
Evie chooses to see a dermatologist at a hospital that trains medical students and it was here that she heard about some research into genetics and eczema.
Age at interview: 20
Sex: Female
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Yeah, well last year I got admitted to a, a different dermatology when I was re-admitted from the GP. And they told me something interesting about a filaggrin gene, which is the , the gene that is, I think you’ve got two copies, and if one or both of them is mutated your body can't control its moisture levels in its skin, and through the university I just went and looked at medical journals and it was actually really interesting.
But I haven’t been formally tested for it but I think it's quite obvious that I probably do.
But yeah a-, that was really fascinating cos there isn't really a lot of research into eczema.
Which I was…cos when I was trying to find, they had like a scientific cause, no-one really knows yeah.
Some people felt that understanding the causes of eczema was less important now they had come to accept having the condition. Instead, they were more interested in learning ways to treat and manage their eczema – including how to avoid or limit triggers.
Aman doesn’t remember the details of eczema causes because he feels these make no difference to the day-to-day experience of living with the condition.
Aman doesn’t remember the details of eczema causes because he feels these make no difference to the day-to-day experience of living with the condition.
Age at interview: 23
Sex: Male
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Have any of your GPs or dermatologists ever sort of talked to you about causes of eczema and sort of the underlying medical explanation of it?
Probably on a number of occasions, -I’ve, I think I’ve forgotten everything. Simply because it, I don’t really care anymore. It’s just a-a habit and you know what you have to do to kind of keep it in check.
And, knowing the cause of it doesn't really make a big difference in my opinion in terms of whether, whether your daily treatment is going well or not. I think probably ruminating on that or thinking about it too much is probably not as good for you, kind of psychologically. You just kind of take every day as it comes, even as clichéd as that is. And you just, you just kind of get on with your life, really.
George prefers to focus on ways to manage his eczema.
George prefers to focus on ways to manage his eczema.
Age at interview: 17
Sex: Male
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Is there anything that you’ve not been able to find out about eczema from either your doctors or looking online?
I haven’t been greatly- I haven’t looked into it, into other causes of it but I guess I would like to know what’s caused it in me but I’d rather concentrate on getting rid of it or dealing with it rather than just knowing where it came from cos I know it’s probably not going to go away.
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