‘Why do I have psoriasis?’ is a common question that the young people we talked to had thought about. Some had been diagnosed when they were little and didn’t know much about the skin condition until they were older. Sofia’s parents and doctor found it easiest to describe psoriasis as dry skin when she was little. Doctors may have told the person’s parents but unless it had since been explained to the young person, many didn’t know about the underlying causes. Ella learnt that psoriasis is related to the immune system during secondary school – she says it “never transitioned over to my parents telling me about it because I've had it like basically my whole life”.
Megan talks about her response to being diagnosed with psoriasis when she was age seven by her dermatologist.
Megan talks about her response to being diagnosed with psoriasis when she was age seven by her dermatologist.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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I remember being told that it was psoriasis, and then I sat there and I didn’t know what to do, because I was seven, and I didn’t even like want to go to the hospital; I just wanted to go to school. And then I sat there and I remember my mum trying to explain to me, like-, I knew that it was something to do with my skin, but I didn’t know what it was, and like I used to ask my mum weird questions like, "Am I going to die?" and everything, because at seven, I didn’t know like the side-effects or anything.
And I remember sitting there once the nurse had told my mum, and I just sat there, and like loads of questions went through my head. Like, I didn’t know what to think, because a seven year old doesn’t expect to sit in the hospital and be told that she's got a skin condition, which she could have for the rest of her life. And I just kind of sat there like, this is going to entail on my whole life; I could have it for the rest of it, and like people are going to think it's ugly and horrible, and like I'm going to lose so many people because of it. Like I knew what was going to happen, and then it did eventually.
Normally, new skin cells are produced, moved through the layers of the skin and flake off every 3-4 weeks. In psoriasis, this process happens much quicker (only a few days). This means that the skins cells aren’t fully developed and layer up on the surface of the skin, which leads to the psoriasis symptom of skin flaking. Health professionals think this difference in the pace of the skin cycle happens because some cells and processes in the immune system become over-active and this causes inflammation (swelling) and scaling on the skin. This process can sometimes affect joints too, causing psoriatic arthritis.
Dr McPherson explains what happens with the skin in psoriasis.
Dr McPherson explains what happens with the skin in psoriasis.
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So in psoriasis, you see here's the normal skin. You've got your cells here, and the epidermis, nice and tightly packed together. And that's the hair coming out of the hair follicle. And actually what happens in psoriasis, is this bit of the skin, the epidermis gets very thick and inflamed. And that's why you see these sort of red plaques with scale on them, so. Hopefully you can see the difference here. You've got all these cells packed on top of each other. That's the scale you see with psoriasis. And you can actually see this very- so this is what a thick plaque of psoriasis- so the skin's much thicker. The cells are sort of over-producing to form these thick plaques. So they actually have a very sort of, you know, thicker layer. And actually- as opposed to eczema, actually kind of an increased kind of barrier function. But it still can cause drying, because of all the scaliness, and that's why we do use moisturiser in psoriasis, as well as other treatments.
But mostly it's a lot of inflammation, a lot of kind of cell turnover, to produce these thickened areas of skin.
The exact reasons why some people develop psoriasis (i.e. why they develop inflammation and scaling on the skin) is not fully known. Megan found it helpful to think about there being a “switch” for psoriasis which some of her treatments helped to ‘turn off’ but “the switch is still there… it could come back at any time”. What triggers the psoriasis ‘switch’ to turn on in the first place is unclear and seems to vary from person to person (see here for more about triggers).
Genetics as a possible cause was mentioned by many of the people we talked to. Some knew of family members who also had psoriasis or another skin condition. Sofia learnt about genetics at school and used to joke that it was her dad’s fault because his side of the family have a history of skin conditions. Others were the only person in their family to develop psoriasis. Hannah. Adam and Zara had heard that children with psoriasis sometimes ‘grow out’ of it, but this hadn’t happened for them.
Zara was young when she developed psoriasis and didn’t understand why she had it. At first, she blamed her grandfather.
Zara was young when she developed psoriasis and didn’t understand why she had it. At first, she blamed her grandfather.
Age at interview: 16
Sex: Female
Age at diagnosis: 2
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I just didn’t understand why it was me that had the psoriasis and what I’d done wrong. So yeh that used to make me quite angry and upset, but yeh now I just kind of carry on with.
Did you used to have that sort of blame like what have I done wrong?
Yeh I’d just, I couldn’t understand it. My grandpy has psoriasis.
Right.
So he has it on his body.
Oh okay.
And I, when I was younger I used to blame him and I mean when I grew up I realised it wasn’t his fault.
It was just something that happened, but yeh I was, it was annoying because I didn’t realise, I didn’t understand why it was me that had it and whey couldn’t somebody else have had it and because nobody really understood. I felt like I was alone and nobody understood what I was going through.
Dr McPherson talks about the role of genetics in psoriasis.
Dr McPherson talks about the role of genetics in psoriasis.
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So psoriasis is like eczema, another very complex disease with lots of different things playing a role. But it's probably kind of pro-inflammatory state, which you inherit some genes which make you more at risk of it. There's not one gene for psoriasis, there's lots of genes, it's kind of, you know, is a complex disorder. But we do know if you've got one or two parents with psoriasis, you yourself are more likely to get psoriasis, and your brothers and sisters are more likely to have psoriasis. So it definitely runs in families. The trait runs in families. But like a lot of these very complex conditions, it seems like something will then trigger it off. So it may be infection, it might be a stressful event, you know, other things can therefore trigger off the kind of inflammatory pathways of psoriasis.
Doctors usually explained a bit about psoriasis at appointments and a few people had also looked up about the causes online. Lisa used her university library to search for medical articles about causes and triggers, but found it confusing. Adam thinks it would be useful to know more about current research on psoriasis, including on causes and treatments.
Steven struggled to find an explanation of the causes of psoriasis which was pitched at the right level.
Steven struggled to find an explanation of the causes of psoriasis which was pitched at the right level.
Age at interview: 22
Sex: Male
Age at diagnosis: 14
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With psoriasis though, I’ve struggled to find more beefy, I think is the best way of putting it, information. The bones were there. But there was no meat on those bones and to like, I’m quite inquisitive with things. I like to know what’s going on. I like to know exactly, like as much as I can understand the reason. And, you know you look up something more common and like this sounds really, I don’t wanna sound like almost cruel and heartless. But if you look up cancer there are a 100,000, not, obviously because it’s far more common than this – but there are hundreds of thousands of web pages of like in-depth information about what the cells are doing and what type of cancer you’ve got and whatever. And there is stuff about like the different types of psoriasis and that’s kind of where it tends to – you know, you can look up at Wikipedia and it goes into like the chemical compound of like what your skin’s doing. And you’re like, ‘yeah, that’s a bit too much actually. [Laughs] Like, calm down’. But there wasn’t really anywhere that was kind of like intermediate. I’m lucky that I’ve got dad and I said to dad like, “Come on mate, what’s going on?” and he kind of like helped me. But it can be difficult to find stuff.
Some people talked about psoriasis and its causes to others. Sometimes this was because they had been asked a question or in response to a comment made about their psoriasis. Megan says she became better at explaining it as she got older and understood more. Most people felt others didn’t know about psoriasis and often thought it was something they could catch (contagious). Even if comments are made out of ignorance, they can still cause upset. This includes other people's incorrect assumptions that psoriasis was because the person didn’t take care of themselves, had a bad diet or an unhealthy lifestyle. Instead, as Steven said, psoriasis is “not your fault”. Some people found it tricky explaining psoriasis in ways that others would understand and accept. Lola thinks calling it ‘a chronic disease’ “sounds really gruesome or horrible” – she prefers to say “it’s your skin making more skin”. Steven put a positive spin on the increased skin cell production of psoriasis as his body doing 'too much'. Some people thought it was important to explain that psoriasis is about the immune system, not just the skin.
Ella’s explains about psoriasis to her peers but finds their responses can be hurtful and frustrating.
Ella’s explains about psoriasis to her peers but finds their responses can be hurtful and frustrating.
Age at interview: 16
Sex: Female
Age at diagnosis: 3
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So, I turned around and I was-, and they were like, "What is wrong with your ear?" and I was like and then I explained what it was and they were like, "Is it contagious?" that was the first thing that they said, "Is it contagious?" So, I was like, "No, like why would it be contagious?" like. And I have been asked that like quite a few times, and I'm so surprised. Like, if you hear-, I was like, “Oh I have a skin condition,” they're like, "Is that contagious?" It's like is acne contagious; is eczema contagious? Like just because you haven't heard about it before like it doesn’t mean you should judge it, or just because it looks a bit different to like what you're used to. Argh, just like it gets me really annoyed when people ask stupid things like that. Like if you want to ask and you like-, you're just curious and you want to ask, then I'm fine explaining to people like what it is. Usually now it's not as noticeable so I don’t get it as much, but when it was quite bad people would ask quite a lot, which is fine. I'm fine to explain but if you're rude about it, or if you're mean about it, especially if you're bullying or like just being mean then just-, it just really upsets me.
Megan finds it difficult to describe psoriasis to her friends as the wording is sometimes unfamiliar.
Megan finds it difficult to describe psoriasis to her friends as the wording is sometimes unfamiliar.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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I find I can talk to like my close friends about it but I still find that quite tricky, because some of the things that I understand about it, they don’t. So, I kind of have to be careful in my explanation, because if I explain something and they're like, "What?" It's like, 'Oh I have to explain it this way instead of that way.'
Could you give me an example of that?
Like, when I was talking to them about like what it's like – it's a chronic inflammatory skin condition and everything – it really confused them because like you don’t hear some of the words most of time; and like it took a lot of like time to explain like the different treatments and what it entails, how it helps you and everything, because they didn’t really like, they didn’t have any experience with it, so didn’t really know.
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