Sources of information and support about eczema

There are many sources of information and (practical, emotional) support that young people with eczema talked about. These include:

The main information young people wanted were explanations of eczema (symptoms, causes, triggers – including diet) and treatments. Many also wanted information and support for the emotional impacts. Most people said that health professionals were their biggest source of information about eczema, but that they also used the internet. Some people also noticed their doctors using the internet for information during their appointments.

Cat’s looked online for information about eczema treatments.

Age at interview 24

Gender Female

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There’s quite a lot of good information out there and it’s just sort of sort of picking through it and reading it and getting a bit more background and what, yeah, what it is people’s experiences as well, like sort of the point of this thing. So, yeah just sort of yeah, just Google whatever it is and see what comes up, and obviously there’s stuff that doesn’t apply to you, but it is quite a good way to sort of find stuff out that you maybe wouldn’t, or you wouldn’t even think of to sort of ask someone, or something like that so.

Could you tell me any examples of those things that you’ve looked for, or things that have come up that you wouldn’t have thought to ask previously?

Yeah so when they put me on like these immunosuppressants, so you just sort of Google that and sort of like put side-effects in or something, and then you just get a whole list of stuff, and you just sort of read through it, see what someone else. So things like, you know, to look out for. Obviously see what like the sort of side-effects people have, or things like when to take tablets like well if people have any advice like sort of stuff like that. It probably won’t work for you but it’s good to sort of see what stuff’s out there, or see how long people are sort of on stuff for and things like that so, it is yeah, quite useful.

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Abid finds it off-putting when GPs look online for information.

Age at interview 24

Gender Male

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I’ve generally just done, done quite like a vague Google search and tried to click whatever I could’ve but the information again was quite varied.

Strangely enough and this sounds very strange but I’ve, I’ve seen in more recent times again without naming any names of peoples or places or whatever but doctor’s in front of you, oh I’ve got this, so and so blah, blah, blah I think it’s this term, oh okay let me just search that up for you and they in front of you will go on Google and it was, it’s it’s such a strange experience. But that’s unfair I guess to assume that one GP can know every single condition out there in the world, but it’s such an unsettling experience and it’s it’s awkward and you don’t really know what to do or say in that situation but oh okay that’s interesting you’re on the same site as I did [laughs]. But yeah it’s, it’s kind of hard to take that kind of advice seriously because you’ve just seen it yourself

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Jessica heard about vulval eczema online but found her doctors didn’t know much about it.

Age at interview 20

Gender Female

Age at diagnosis 20

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like right now I’d say I know more about vulvar eczema than like majority of GPs, which is like, I don’t know, the fact that like, I- a Google article can tell me and like they don’t know anything about it sort of thing.

How long did it take you sort of looking online to find vulval eczema as an explanation?

Like two seconds.

Yeah.

Like, yeah, like or maybe I’d read an article or, like not every article that you say, that has like itchy, you have an itchy vulva—but like the majority of them would actually even like, the majority of them would reference eczema probably at the end. And so then from then, if and then if you actually Google vulvar eczema then you get lots of stuff. So, yeah.

And like it’s not even a problem like, I’m pro- pretty sure that like even some sort of NHS site has vulvar eczema on it somewhere.

I don’t know understand if like there’s so much information out on the Internet like, I dunno is it not, not somewhere that like or even like can’t the doctor just Google it? Like the fact that, when I went to the GP here and he was like, I’m out of options, I have no idea what you’d have. Like Google could tell me the, p- possible things that I could have. Why can’t you tell me the possible things that I could have?

Like I didn’t understand that. That was a bit weird.

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The internet was sometimes used to fill in ‘gaps’ that people felt their health professionals hadn’t covered. Lots of people learnt about lifestyle (like diet and exercise) mostly through looking online. Some thought it would be good for health professionals to talk more about lifestyle also. Another gap that some young people found was that their health professionals often didn’t say much about the emotional impacts of eczema or what support might be helpful. There were some things that young people first heard about when looking online or through friends with eczema but feel their doctors should have told them about, such as the side effects of overusing steroids. Sarah heard about Protopic (tacrolimus) for the first time through her friend who’d seen a dermatologist privately.

Georgia has researched online about topical steroid withdrawal. She’d like to explore other treatment routes with her dermatologist.

Age at interview 20

Gender Female

Age at diagnosis 4

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One thing I’ve come across recently is topical steroid withdrawal and addiction. When I’ve been using, when it got quite severe and I was referred back to my dermatologist, I was put on courses of prednisolone and Trimovate and I’ve had Protopic and Betnovate. Which are all, Protopic isn’t a steroid but they’re quite, the Betnovate and the Trimovate I think are quite potent. And I wanted to stay away from that because, as I mentioned earlier, I like naturally occurring products, something that’s not gonna have serious side effects on my skin. Which, what I’ve been reading up on is skin thinning, it becomes red and it can deteriorate. And it wasn’t really something I’d wanted to, I didn’t wanna go down that route because my skin is already quite red anyway. And I think it, it’s a bit harsh. But after talking with my dermatologist, who wasn’t too happy for me to go down the route without steroids I think. Because it has such a, it does have a really high success rate. I won’t, I won’t deny that. They’ve been using them for 50 years or so and they are really successful with people that have severe eczema. But after reading up on topical steroid addiction and withdrawal, some of the symptoms, such as regularly infected skin, it’s constantly swollen, red. There’s like a scent of iron actually that I noticed on my skin, which is quite odd. And reading up on some of these people who do suffer with it and are going through the withdrawal of it. It’s, it’s quite severe what they go through. Even though s-, steroids are such an easy route to go down. They, you just put it on for about three weeks or so and use it intermittently, and your eczema is gone. But these people are trying to sort of push the toxins and steroids out of their body, and have been for about two or three years. And they’re still going through symptoms of s-, swollen skin, it’s red, it’s cracked, it’s infected all the time. And I don’t think mine is as severe as theirs, possibly because mine is more stress related and my allergies aren’t as bad as theirs. But it is still a route I would like to explore. And I think I would really appreciate it if it was an option that doctors and dermatologists were more prepared to explore. Rather than accepting that the only route is sort of scientific research instead of going down the herbal route. And sort of just allowing a bit more preference from the patient, not necessarily what they’ve found to be successful in the past.

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Abid has read about diet and eczema online, but didn’t find talking to his doctor helpful about it.

Age at interview 24

Gender Male

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Because I read a lot into, cos now we have the internet everyone is, is their own hypochondriac and /doctor and I read into it and it was like don’t eat this, this, this. Also you can get your doctor to, to get some kind of like a stickers on your body or something like that and they can test what you’re allergic to and not allergic to and I was like okay this is cool.

Straight up went to my doctor said Oh I’d like to be tested for what I’m allergic to’ and Nah sorry we can’t really do that we don’t really have the facilities or I don’t think this would affect your eczema in any particular way’ or you know, these, these kind of like half-hearted jargon filled answers which you’re kind of expected to just kind of be confused and mildly acceptant of. So I got a lot of that and then it was yeah it w-, it was kind of a situation where just deal with it yourself.

Some things are realistic, some things aren’t like I don’t know if this is me personally but like keeping the idea of like a food diary is like hard work. Like I even tried downloading an App on my phone where you just record like the calories, I don’t know if you’ve seen sort of those.

But yeah that, that’s for some people that’s quite a that, that’s an okay alternative I guess but for me personally it’s, it’s a little bit too much of a challenge to like constantly keep track of everything, maybe because I eat too much I don’t know.

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Some people looked online to find out about others experiences of having eczema and using treatments such as emollients. This was especially helpful when first getting a diagnosis or deciding whether to try a treatment such as phototherapy. The internet could also help with working out triggers, such as for Sarah who learnt that shampoo, hairspray and deodorant could lead to eczema on other parts of her body. Other times people typed in specific questions or wanted to see photographs of others eczema to compare to their own. Several young women said they had looked for home remedy recipes and/or beauty products recommended by others which they could try. Two exampls of home remedies Ele found were putting wet oats and natural yoghurt on her hand eczema.

Shams uses wet wraps to keep his eczema moisturised when doing sports.

Age at interview 18

Gender Male

Age at diagnosis 7

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For example, I had one; I had one comment I remember looking at where there was this girl footballer she was probably a couple of years younger than me, but she commented that during football she would have like these wet bandage wraps around her legs. She suggested that if anyone has major eczema in sort of joint or some joint areas, she would say get a wet bandage, wrap it around your leg with a dry and try and sort of knee-guard as support over on top; hold it in place just to stop the sort of friction between your skin – little suggestions but like but, you know accumulate to helping, you know everyday tasks got more easier, more sort of doable in a sense yeah.

Is that something that you tried with the wet bandage?

Yeah that was one thing I also got from the doctors as well but I didn’t know in what context to use it. I usually put on wet bandages and just lie in my bed and think I can’t do anything for the rest of the day, but I didn’t realise if you sort of likefor example, I used to try out boxing, so I would wrap around my wrists and my arms, tie them up and box away. I’d take em off and see that my arms are still moisturised; it hasn’t dried up, cracked or swollen. And it’s been really helpful these little suggestions especially when, years or days I’ve been training, and little suggestions to keep the eczema out of focus, out of a way from interfering has been quite useful.

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

Age at interview 19

Gender Female

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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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Sarah looks at beauty blogs online to find out about products to try.

Age at interview 23

Gender Female

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There’s a lot of like beauty bloggers online that you can read about. But there’s some that focus on eczema. It’s quite like a shady area because one person’s eczema is another person’s like dry skin. And if you see what I mean, like you don’t really know what their experiences are. But it has been quite eye-opening because there’s some people whose blogs you can read who post photos about living with it. And there’s a lot of, online about like cutting out steroids and how that’s like been for people. And you really, it’s really like wow, like my eczema is not bad at all. Like people have much, much, much worse, like full body, like just awful. And like people who are caring for their children who have it really bad. And you think, it, it kind of puts everything in perspective. It’s quite nice to kind of see like-, there’s like a bit of a community that’s surrounding it. Especially like America and England I think are mainly the people that I’ve found online. But it does like put you in, like it puts it in perspective. And also like I, even though I had friends with eczema, I hadn’t like known anyone who had the same like puffy eye things that I got. And then like someone posted a photo online of it. I was like that’s exactly what it, it’s like. And it was so like oh, like I wish I could meet this person and be like, I have exactly the same problem as you. And then I’ve used like products that I’ve found like recommended on like eczema websites or blogs.

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The information and experiences shared online are from around the world. Jessica found a lot of online blogs and discussions about vulval eczema were based in America, so their experiences of paying for treatments were different to hers.

Abid says the information he finds online is not always relevant to him.

Age at interview 24

Gender Male

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I’ve had a look into like WebMD and stuff like that but the information you get is so physically geographically varied. You’ll find like information from a- around the whole world and strangely enough it’s not always, always relevant to like if you’re, if you’re from a particular country for example and your humidity level and environment etc. these all play a big fact, and if you’re from a country and you’ve moved to another country , or born in that particular country like myself, then itsgenetically, you are a particular type of person and you have to quite, you have to acknowledge that and kind of adapt to that. So yeah some of the information wasn’t particularly helpful. Websites, I’ve generally just done quite like a vague Google search and tried to click whatever I could’ve but the information again was quite varied.

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There were mixed feelings on using the internet to learn about eczema. Evie felt it can be educational and help people talk more openly about their experiences. But lots of people stressed that not everything you read is true or helpful. Aisha described message boards as ‘murky’. Some people cautioned about home remedies which could be dangerous and scams promising a ‘cure’. Evie checks the website’s name when deciding if it’s likely to have ‘good’ information or not. She says some forums and blogs are not very active and may be out-of-date. Abid suggests asking your doctor about things you’ve read online, but some worried that their doctors would be dismissive. Some people ‘follow’ eczema charities, such as the National Eczema Society, on social media and found they posted helpful information – although many people didn’t know that eczema charities existed.

George has come across mixed information about hyperhidrosis (a sweating condition which aggravates his eczema).

Age at interview 17

Gender Male

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Have you ever looked online for information about skin conditions?

Yeah, I have but I usually get bogged down information and stuff often contradicts itself, information. But I’d rather speak to a doctor than do my own research.

Could you maybe give me an example of when you found contradictory things online?

So I think I looked up hyperhidrosis’ on Wikipedia and you get loads of information and then there were certain causes for it. And then I looked at, I think it was the NHS Choices website. And it said something different about what causes it. And there’s other treatments that weren’t listed and-, other one, and then another place said this treatment doesn’t work. I remember that. So I just didn’t know where to go.

And how does that compare to you when you speak to your doctors?

Well, they said that a certain website was right. I think it was, I’m sure it would have been the NHS website because that’s what it’s designed to do but I just felt more, I just trusted my doctor more because obviously they know what they are talking about. So I felt more confident.

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Aisha worries that her doctors wouldn’t take her seriously if she asked about things she’s seen online.

Age at interview 21

Gender Female

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I think you kind of feel silly as well going to your doctor and saying, “Well I read this on that.” I think doctors sort of, they look quite down on you that you’ve done your own research in a sense, cos they think you’re being sort of a hypochondriac in a way you know, you’re sort of kind of like, “Well hang on, you know I do know better than you; I am I did a degree, I’m a doctor after all and you’re kind of just somebody who thinks they’re a doctor because they looked up a couple of symptoms on WebMD,” but, you know I kind of feel like there should be a bit more of a better relationship I guess with the whole what is approved and what is not approved and what is good and what isn’t good.

And just there is a lack of information out there.

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No one we spoke to had been to a face-to-face group about eczema, but some had used online groups, blogs and discussion boards. This was good for those who didn’t know anyone else with it in their ‘real’/offline life. Most people who’d used the groups had read others posts but not written anything themselves. Shams and Jessica hadn’t posted because they didn’t feel they had anything extra to add to what others had already written. A few people had written posts or replied to other’s comments. Sarah has posted in replies but not had any ongoing conversations in the online groups.

Jessica has done a lot of research on the internet about vulva eczema.

Age at interview 20

Gender Female

Age at diagnosis 20

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I’ve literally feel like I’ve looked through any sort remotely big website. The main thing I think I looked like there, there were two like biggish sort of blogs of people and writing about their experiences. I think it definitely seems to, hit older people more. Or people often who’ve had like children and stuff. There were like quite a few people my age, but like, yeah, I see, I think this is the sort of thing that like if you have it and you go online that like you would write and stuffs. But I think like, oh well I don’t think it’s a very common problem. Yeah, I don’t, I don’t know if it was, it made me feel better or worse I think, that there were so many people that were like oh, we’ve had really shit experiences with like doctors and things and stuff. I think yeah, oh and I think there were like, you know people that had some sort of success were like, I went to a really good like dermatologist who told me to do this and put me on some sort of like treatment. There were some people that were like, had help through like unconventional medicine which was quite surprising. Yeah, but there were a lot of like and I think by the end of my research I could tell there were a lot of like, I could see like, I read things by a lot of frustrated people that like were probably slightly earlier in the process than me. So you kind of like see how frustrated they were. Yeah, so I dunno if that made me feel better or worse, but I did look through it all.

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Evie likes to help out in some online support groups, including one for parents of children with eczema.

Age at interview 20

Gender Female

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Yeah, well it’s more just a kind of as and when basis, someone will write on there and you can put your input in. So mums that are really like flapping like, ‘Oh I’m not doing enough for my child,’ orand you kind of give them ideas, share ideas and people askespecially, what happens most is asking like always is steroid OK, did anyone have any problems?

Cos obviously they’re dealing with four/five year old children.

And I’ve grownI’m quite lucky that I’ve grown up with it and I’ve been through all of it and I can tell people my exact experience.

And do you find that people tend to sort of respond to you and it tends to become a conversation about that or?

Yeah it does cos then they go, ‘Ooh that didn’t work; what else did you have?’ and then you can kind of talk to them and they can talk to their GP. So, yeah it’s goodit’s to have, to have like a mutual kind of condition you can talk about and it makes it normal.

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Ele looks at eczema forums online but doesn’t post anything herself.

Age at interview 22

Gender Female

Age at diagnosis 2

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No I’m a lurker I just read because a lot of the time when I’m looking for stuff like that then I’m in a position where I’m in a lot of pain, it’s very itchy I just want something like is there something in my house right now that I could put on this and make it go away or make it stop a little, you know, become less itchy and less dry. And so most of the time when I’m reading that stuff I don’t really have time to sit and wait for replies I just find what I can and go and do it.

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Online groups and forums often included people sharing their feelings about having eczema. Evie likes being in an online group about eczema because ‘you can just help each other out’ and talking ‘makes it normal’. Many people said their friends and family didn’t understand in the same way as a person with eczema could. This could lead to them being frustrated by comments (e.g. ‘don’t scratch’) and unwanted suggestions (e.g. ‘have you tried putting cream on it?’) even if they were well-meaning.

Aman thinks you have to be careful about what you believe online but that it can be a good source of emotional support.

Age at interview 23

Gender Male

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when you have your flare ups, y-you inevitably drop to a low enough level that, that you kind of think, well, you know, oh god, [laughs] how else can I re-, how get help or treatment if what I’m using at the moment isn’t really helping. So, yeah, there are a number of online forums. Most of them tend to have as many scary stories as, as good ones and there’ll be people promoting certain products and people absolutely hating them. So take everything with a pinch of salt like that and, and I certainly did. But in general it’s nice t-to even just vent and get your feelings out there if you, if you think, well, okay, you know, today is a really bad day. My skin’s feeling absolutely horrible. And that kind of takes it out a little bit, because you generally don’t have anyone to vent your frustrations to because it’s a problem that’s on you. And, yeah, that kind of psychologically becomes a bit difficult when, when you’re experiencing a flare up or your skin’s quite bad.

So you would post on some of the groups if you were having…

Yeah

a bit of a low day?

Not regularly, I would say, if that, that would be like you know, kind of I’m surfing the internet and I’m feeling like my skin’s horrible and generally you’re kind of searching for different treatments or things like that. And you kind of get linked to something. So I’ve not been a regular poster or of anything like that. But I haven’t really found any useful websites or communities where people are talking about it. There are a few I know out there. But as soon as your skin gets better, you inevitably just leave it, because you don’t think about it anymore. And it’s only at the times where you’re feeling bad about it that, that you go and check in and say, oh, well you know, this is what’s happening. And people generally are quite friendly and, and helpful.

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Naomi gets fed up with people giving her advice but would like to know about the experiences of others with eczema.

Age at interview 17

Gender Female

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I get loads of people giving me advice, a lot of the time it’s almost the same thing. “Have you tried this cream, have you tried that cream?” “I’m going to get this cream for you and you can try it,” and none of it works. So, almost I don’t know if I would give advice; I’d probably want to knowI’d want to know about what, like how, like if they have eczema like me, I’d want, “Oh what clothes do you wear, like what bedding do you have, have often do you drink a day, how long do you bath, what baths do you put in your bath; is there any products, like scented products, that you use that won’t irritate your skin?” You know I want to know things so that I could probably like, “Do you know any jewellery I could wear that might actually, you know won’t irritate your skin?” You know things like that.

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Not everyone felt they needed or wanted to talk to other people online about their eczema. Some didn’t think they’d benefit from doing so. Most of the ’emotional’ accounts Ele’s read have been by people for whom eczema is ‘practically a disability’ and she says hers is ‘minor’ in comparison. Alice’s eczema isn’t something she wants online emotional support for and she compared it to other health conditions that she’s more worried about. Laura says she would probably have joined a support group if her eczema had been more severe but feels she’s ‘reached a point where it’s like not a big thing in my life’. A few people said they would have liked support early on, but don’t need it now that they’ve learnt to manage their eczema.

Some people had never looked online about eczema or hadn’t done so for a long time. Parents had often done some research when their young children were first diagnosed. Sometimes parents helped explain it to the young person, as was the case for Aadam with information that was ‘too scientific’ for him to understand on his own. Some people had done some research online when they got older, but were sometimes put off doing it again. Aisha says she’s ‘gone through pages and pages and still haven’t come up with anything’ helpful. Vicky remembers trying to find online support groups when she was a teenager but stopped searching as she didn’t find what she was looking for. Aadam stopped looking online after seeing eczema described as ‘a disease’.

Laura has started researching more about eczema recently.

Age at interview 22

Gender Female

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When it’s a condition that you’re used to, then it becomes the norm and you forget about, you forget [laughs] that it’s like a thing. And then, more recently I was like, “Oh I might potentially be able to like” Cos I’m getting to an age where lots of people, it sort of disappears for a lot of people, I thought that maybe I should do some research and really get on top of it because it is a thing you have to sort of make an effort to do. And so I think this year I’ve like been trying to, that’s why I came across this because I was on the website and I sort of was looking into different treatments and things. But, again a lot of it is that you already know. It’s interesting when you read things though that you already know like symptoms that you’re like oh yeh that actually other people have that and I think that’s why these sort of interviews are really good cos it just links everyday common things that you experience to that other people experience as well, so it kind of all makes more sense.

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Alice has had eczema since she was little and hasn’t looked online about it.

Age at interview 22

Gender Female

Age at diagnosis 7

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I guess the only things that I’ve kind of learnt about it have been from my own experience and knowing how I deal with it. I honestly, I’ve never gone out of my way to Google eczema and find out what it is and, I’m not really sure why actually now, I suppose it’s because I’ve had it for so long that I don’t think about it anymore and now it’s actually easy to go and Google all the information I just haven’t. But yeh it’s mainly just things like moisturising and the antihistamines and whatever that I know make a difference but yeh.

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Gary had a phase of reading a lot about eczema online.

Age at interview 23

Gender Male

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The first year I was looking a lot. I was going Youtube, watching all the videos; I was searching for-. I was searching but I cannot really remember where I looked but I looked on so many pages. I tried to find all the information, tried to find all the information. I went, first I read Wikipedia; then below Wikipedia it shows the links where they have the information from, so I was reading those links as well and-. But I, the conclusion for me was like no-one really knows why people have eczema; no-one really knows what’s the cure for it, and, that, that was a kind of the time when I decided that I’m going to have my destiny in my own hands cos I was like OK, if other people cannot help me then I will find it myself not the cure for it, just how to live with it.

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Evie and Cat had used their university library access to find articles about eczema published in medical journals. Cat typed in the names of her dermatologists to see if they’d written about eczema, as ‘it just sort of makes you feel a bit more confident in what they’re saying’. Some people wanted to be able to share their experiences with doctors to help other patients in the future. Aadam agreed to be a case study for his dermatologist to teach about and Evie feels she helps medical students understand what it’s like to have eczema.¬†

Jobs, work and eczema

Some of the young people were in full-time jobs currently, others had experience of part-time jobs before or during university, and others had not yet...