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Psoriasis (young people)

What are the different types of psoriasis?

There are different types of psoriasis – including those which affect particular body parts. Some young people we talked to had been told by their doctor which type of psoriasis they have. Others, like Lola, hadn’t been told. A few people had several types of psoriasis at once. Some people, like Adam and Hannah, found their psoriasis changed from one type to another over time.

The types of psoriasis include:
  • plaque psoriasis
  • guttate psoriasis 
  • pustular psoriasis
  • scalp psoriasis
  • nail psoriasis
  • genital psoriasis
 

Dr McPherson talks about some of the types of psoriasis.

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So psoriasis is a kind of umbrella term for a type of inflammation of the skin, where you've got sort of scaly plaques. And there are several different types. The most common by far is something called chronic plaque psoriasis. And that's the one which is probably about one to two percent of the population have chronic plaque psoriasis, so it's not quite as common as eczema, but it's really not uncommon. It's often quite a hidden disease, I think people often feel quite stigmatised if they've got even a small amount of psoriasis. So they will, you know, often not sort of show their skin, or expose their skin to people. And that's the type of psoriasis where you often get it on the elbows, you can get it on the scalp, and it tends to be, as the name suggests, it's chronic. Tends to come and go, depending on different, you know times of life. But that's- and it has quite a strong genetic link. So if you've got parents with psoriasis, you're more likely to get that one. There's another, the other sort of common type of psoriasis, and it's a more reactive type of psoriasis, is called guttate psoriasis. And that you see with a sort of particular trigger. So you may have an infection, such as streptococcal throat infection, or something like that, and then you get a, that sort of triggers off your kind of immune system to produce very small little droplets of psoriasis often, in this kind of guttate picture. So sort of on someone's back, in smaller plaques. If you have guttate psoriasis, you know you're more prone to chronic plaque psoriasis, because some of the things are quite similar.

And those are, you know. But within the plaque psoriasis, you can be subdivided into, you know, which part of your body it's affecting. So genital psoriasis, scalp psoriasis, so there’s, you know, a lot, every person with psoriasis will have a different pattern of disease. But the sort of similarities would be type of skin changes you get, the sort of clearly marked out plaques of psoriasis, often with a sort of silvery scale. And then there are associated types of psoriasis, so you can get- your nails can be affected, with nail psoriasis.
People often talked about the severity of their psoriasis. This is usually based on how much of their body is affected (0-100% of coverage) – some people knew this as their ‘PASI’ (Psoriasis Area Severity Index) score. Hannah says hers was 70%-80% last year but is now down to 3% since having biological injections. Lots of people had fears about their psoriasis becoming worse in the future. Yet, it could also be frustrating to be told by doctors that certain treatments weren’t available to them currently because their psoriasis wasn’t considered ‘bad enough’.
 

Megan describes how the severity of her psoriasis changed over the years.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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It's kind of been like a rollercoaster I guess, where it was like, when I first got it, it was quite bad, and then it's got better – bad – better, but I remember, I think it's like June, July four, five years ago, and it got really bad, and we'd just broke up from school and it got really, really bad, like you couldn’t see my skin; like except from like my wrist down; and my feet, my arms, my body, my chest, my back, everything was completely covered. And like I felt really self-conscious, but I didn’t want to go out that whole summer, and like my sisters would go, "Do you want come play in the garden?" and I didn’t want to cos I was scared of cutting it as well.

Because I couldn’t like do the things that I wanted to do; like I couldn’t go on bike rides because if I fell off I'd cut myself. So I was like, it got to the point where I was like really scared to do things, so I'd just kind of stay in cos I didn’t want to hurt myself, because I knew that if I'd hurt myself it would cut and it would bleed, and then it would grow again; and it was kind of I knew that was going to happen.
 
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Adam worries about what the future might hold with the severity of his psoriasis and whether treatments, like steroid creams, will still be effective on his skin.

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Age at interview: 24
Sex: Male
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I do worry about the day, and I do anticipate the day when nothing’s going to be able to help me. I don’t see, I follow kind of news of progress on psoriasis and stuff like that, and I don’t see us progressing anywhere from the treatments that we use now and treatments that we used twenty years ago. And so you see that other conditions are like moving really fast in terms of what, cos they’re prioritised or something like that. And, and this is something that’s really important to me. And I don’t feel like certain skin conditions are prioritised in terms of research or investment.

And I do track that sort of thing. And I’m worried that what I’ve used is, is not going to work on me soon, because things have stopped working on me in the past. And, or they’re not as, this, this ointment that I use, it used to, I remember when I used to put it on, it would literally, I would see an improvement by the end of the day. Like it was so good when I first got it. It was amazing. Now it takes like, if I was to put it on say today, it would take maybe like four days for the effects to kind of kick in. Which is still not too bad.
Psoriasis subtype: plaque psoriasis

Plaque psoriasis is the most common type of psoriasis and many of the people we talked to had it. The symptoms include red, dry and flaky skin in patches of different sizes of more than 1cm. Some people had fairly small plaques of psoriasis, others had big areas covered by psoriasis plaques. This type of psoriasis tends to be chronic (long lasting), for which certain triggers can cause more severe flare-ups. The size and location on the body of the psoriasis can affect which types of treatment are used.
 

When Damini has a flare-up, her psoriasis plaques develop quickly.

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Age at interview: 21
Sex: Female
Age at diagnosis: 4
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Could you tell me a bit about how you first started noticing?

I started noticing a few patches on my arms. I didn’t really take it seriously. And then all of a sudden it just took over and I was covered, so there wasn’t a time where I thought ‘oh, I need to go to the doctors to control it again’, because by the time, I was, I was going to – it just came back. It does seem to, when I have a flare-up it does come back quite vigorously, quite quickly. 

Was that the same when you were a teenager?

Yeah, as well, yep. 
 
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Abbie talks about the body parts affected, such as her legs where she gets big psoriasis plaques.

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Age at interview: 20
Sex: Female
Age at diagnosis: 10
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So when I was younger it mostly just affected my knees a little bit, my elbows and mostly my scalp, and that was the worst part especially around my ears and around the bottom which obviously wasn’t the nicest, and then that kind of cleared up. Mostly a lot I get around my ears and in my ears and then elbows, they tend to get it quite a lot, and then I've had it on my legs quite a lot, so from top to bottom, but in bigger patches, and my knees.

It's also when you get big patches on different parts of your skin was the hardest to be able to tackle cos my leg, over the last one or two years, it was the biggest cos it went from my knee down to about my ankle, and that was just one straight patch down. So that was the more difficult one to be able to treat cos as much as I'd moisturise it, it was so big you couldn’t -, trying to see the difference in it or when it would go down it wasn’t -, you couldn’t really tell.
Psoriasis subtype: guttate psoriasis

Guttate psoriasis describes a particular pattern of teardrop shaped psoriasis patches less than 1cm in size. Some said it looked like a rash on their skin. People who have had guttate psoriasis are more likely to develop plaque psoriasis. Guttate psoriasis can be a reaction to a trigger, such as a throat infection, and some people found they had more episodes of guttate psoriasis if they got further sore throats. For Hannah and Jack, putting on steroid creams to guttate psoriasis could be time-consuming and frustrating because it means applying it to each little patch.
 

Hannah talks about her history of skin conditions, including changing from plaque to guttate psoriasis.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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I had eczema as a child, so I've obviously kind of always had a predisposition to dry skin. My mum has really dry skin, but no actual skin conditions. It's not led to any others. The type of psoriasis I've had has changed, so I had plaque psoriasis originally, so like it would be one big area would be covered, like this part of my elbow [points off camera] often was. And then after cyclosporine, when the kind of severe psoriasis started, I got a lot of guttate, which is basically like small droplets of psoriasis, and that, my legs and arms then were like just very, very small and kind of drops. And that was actually more difficult to treat like with creams because you just sort of have to like do every single little one. And with steroid creams they advise that you don't put it on normal skin, so it made it virtually impossible to just kind of like reach those tiny areas all the way, all over. 
 
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Adam uses a steroid-based ointment on his guttate psoriasis. Because the patches are so small, he tends to apply it to the general area affected.

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Age at interview: 24
Sex: Male
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I don’t really use moisturisers. Should do. But, no, it’s just purely like the ointments that I use. And I would just put it on the areas that I have psoriasis. I kind of like, I can’t really like see or reach my, I get a bit down, down my back. So that would be more of a like, just [laughs] like slapping it on. But I’ll kind of slap it on in areas that it tend to, it c-, tends to come up in the same areas. So it comes up mainly kind of down my sides and then down my spine. And then I get bits kind of coming up on my, on my legs and tiny bits on my arms as well. So it tends to come up in the same place. So I can almost without knowing I know where it is almost.

So I can just, so like I get loads of tiny bits kind of that... Because I know kind of say with ointment and like kind of that they’ve got steroids in and stuff, that you should really like only put it on parts of skin that need treating. But if I’ve got like ten bits that are all within like a 10 centimetre radius or something like that, then I’ll just, like that whole area will just get like slapped on and stuff like that. But I wouldn’t kind of put it on a p-, like a healthy piece of skin or, or something, a clear piece of skin.
 
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Lisa has guttate psoriasis. Although the patches are small, she has them all over her body and finds they show through some of her clothes.

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Age at interview: 20
Sex: Female
Age at diagnosis: 11
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It affects everywhere, except for my face, I don’t normally get it on my face, but as I’ve gotten older, I sometimes do. But they’ve given me creams for my face, so after a few days it goes away.

For mine it’s just the guttate psoriasis, so it’s just little patches everywhere. It’s in-, it’s really bumpy and you can sort of see it if I wear like leggings for example. And at the beginning it’s really flaky. So if I wear leggings, I’d and I move around, you’d get white patches, like white flakes everywhere. And I know, even on the treatments, I still get that. So, my room is just covered in what looks like dust, but I know it’s skin, which is disgusting [laughs]. But, yeah. 

Does it ever get itchy or sore?

Yeah, quite a lot, especially if it’s rubbing against something.
Adam had plaque psoriasis (including on the scalp) which cleared up after phototherapy but then came back as small guttate psoriasis patches. In his experience, “plaque psoriasis can be a lot more irritating and a lot more painful at points and flaky” whereas guttate psoriasis looks “like chicken pox or something like that”. Adam read that guttate psoriasis can completely “go away” in children – he was optimistic at first it might for him, but says he now doesn’t think it will.

Psoriasis subtype: pustular psoriasis

Pustular psoriasis is a type in which pus-filled blisters form on the skin. None of the people we talk to specifically named ‘pustular psoriasis’ as the type they had, but Zara and Russell both spoke about developing blisters which are associated with it. Russell hasn’t had blisters with his psoriasis since his first flare-up, but Zara gets them on her feet sometimes.
 

Zara enjoys playing sports but sometimes blisters and oozing from the psoriasis on her feet stop her from playing them.

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Age at interview: 16
Sex: Female
Age at diagnosis: 2
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So like in Year 7 when I first started secondary school I joined all the sports clubs.

Okay.

And I used to love them. I used to regret it afterwards because it was so painful.

Right.

And in year 8 I decided not to do that just so to give my feet some relief but yeh like county badminton was difficult because I was constantly on my feet and I was constantly moving and it was, it was a lot of pressure on my feet and we went on a badminton tour for, four weeks and playing badminton every day my feet were so bad and, but they get to a point where they can’t get any worse and they almost start getting better it’s just a change and they might be more red but they don’t have as much dry or pussy skin on them and you’ve just got to get past that stage, yeh.

And do you sort of know these different stages of your skin how it goes up and down and?

Yeh you recognise a pattern.
Psoriasis subtype: scalp psoriasis

The symptoms of scalp psoriasis could be especially embarrassing for people because skin flaking was visible in the hair and on clothes. This was often mistaken for severe dandruff. For some people, the scalp was the first and only place affected by their psoriasis – but most had developed psoriasis on other parts of the body too. Tar-based shampoos and special steroid ointments specifically for the scalp helped some people, but could have downsides such as being difficult to apply.
 

Having psoriasis on her scalp is difficult for Lola because of the skin flaking.

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Age at interview: 17
Sex: Female
Age at diagnosis: 14
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What’s really nice about brushing my hair, is it gets rid of it and that kind of helps with the itch. It sounds really horrible and gross talking about dead skin falling off you. That for me is really hard at school is that like I will take off my jumper and suddenly whoosh there’s like dead skin, and I’m like ‘ahh’ or looking down and like I move my hair and I can see it on my clothes or on the table if I’m in a lesson or studying. And that for me is just like-, if I was someone else I’d be like, “Ahh that’s horrible.” Or like, you kind of-, if you see-, you don’t,- I don’t know for me I just feel like so like embarrassed and just want to kind of curl up and not be there anymore. Cos you’ve got to deal with it, or like on your jumpers or if I look, I’m like ‘oh it’s on my jumper, just crap, I need to get rid of that.’ 
 

Megan found that the building up of layers of skin on her scalp caused some hair to fall out.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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I think my hair just randomly started falling out one day, and I got really panicky about it, so I was talking to my mum, and my-, we rang the hospital, and they said it could be because my psoriasis was growing thicker in my hair; like it was growing really quickly, and you couldn’t stop it growing even if I put the creams on, like it wouldn’t stop growing, so my hair just started falling out. And then they said to me that I had to like really carefully get like a comb, and carefully like not scrape, like carefully brush my hair so that my psoriasis would fall out of it, and like not cut the tops off of the skin, but take away the skin slowly so that it would reduce it growing so quickly. But I remember like trying to hide it; so I wouldn’t have my hair up; I'd wear my hair down all the time cos it was like right behind my ear, like here [points to left ear]. So, I used to wear my hair down so that you didn’t see it at all.

And did it help with what the dermatology department suggested of combing through your hair, did that help at all?

Yeah it stopped it from growing so quickly, because I was taking the like top layer off as soon as it would grow. So, then cos I brushed my hair like every day anyway; I had to brush it in the morning and the evening to make sure that all the scalp was like clear, and even though I knew it would grow again, I was prepared to go through it, like ready to take off the heads a bit again. 
Psoriasis subtype: nail psoriasis

Psoriasis can affect the nails, causing them to develop little dents and/or discolour. Sometimes people thought this was a fungal infection at first.
 

Hannah talks about her experiences with nail psoriasis on her hands.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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So at the moment I don't really have it that badly. One of my nails is a bit sort of misshapen. But what happens is they can-, it gets sort of pitted and discoloured. So a lot of the time you're wearing nail polish to cover it up which can't exactly be good for the nail psoriasis, to kind of cover it in paint. It's, it's quite an embarra-, like I, I'd say nail psoriasis like did affect me quite badly because I guess like with women this idea of having nice nails is something that you really want and you seem, with your hands, to be really conscious of people looking at them. There were times when my nails were really bad, so that, you know, I could, they were basically just com-, breaking apart all the time. If it gets really bad, sometimes they recommend just pulling them out of your-, the nail bed completely so you basically don't have any nails. So I was always so fearful-, like scared that it was gonna get to the stage where they would just take all my nails. And it is hard, it's, it's strange, but nails are just one of those things where you just think ‘this-, people will see it and it will look awful and it, and it will disgust people’, but yeah, so that was quite hard. And it was just mostly my hands, I didn't have any problems with my feet actually.
 

Simon’s nails are affected by psoriasis. He thinks applying the steroid ointments to his scalp helps his fingernails a bit.

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Age at interview: 22
Sex: Male
Age at diagnosis: 17
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At first it started off on this finger here, my ring finger I believe. It I remember banging the fingertip really badly, again that’s just on a surface when I was moving, and I didn’t think anything of it but then it started to bruise. And I thought that was normal. But then two weeks later it started to turn into this sort of sickly almost like ivory white colour on the tips of my nails, like you can see, and it started to spread until it was about half. Now, it has gone down a little and I think that’s down to the shampoo that I use, Capasal, rubbing off into the, beneath the fingernails.

It started to spread really badly on my hands, sometimes it’s disappeared, other times it isn’t as good, especially here where it’s on a, it’s absolute worst, it’s pretty much covering the entire fingernail at this point. And especially on this finger here you can see that’s starting to really spread because it still has that ivory colour. I think, I believe it’s called epidural, epidermal, epidermal psoriasis. And it is essentially the same condition that it is on the scalp. Unfortunately, because of how it is, being underneath the cuticles there’s nothing really that can be done about it I mean you can try and fish some of it out but it’s gonna keep coming back. Because that’s just how it is. It’s psoriasis. 
In some severe cases, nails can become so weak and broken that they come out of the nail bed. The feet were the only place where Zara had psoriasis. She doesn’t remember much about it, but she lost her toenails when she was little and they haven’t grown back.

Psoriasis subtype: genital psoriasis

Genital psoriasis is when areas such as the vulva, penis or bottom are affected. Abbie had some psoriasis on her bottom, which she said “obviously that wasn’t the nicest”. She said it can be physically very uncomfortable and a major source of embarrassment. Lucy encourages anyone with psoriasis in ‘intimate areas’ to speak to their doctor for suitable treatment.
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