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Psoriasis (young people)

Conditions and complications associated with psoriasis

There are a number of health conditions and complications associated with psoriasis. Some young people had heard of some psoriasis complications or experienced them, but other people weren’t aware of them. The main ones people talked about are discussed in more detail below, such as psoriatic arthritis, infections and mental health impacts. 

There are other possible conditions which can be associated with psoriasis too. Sometimes the association between psoriasis and another health condition is due to similar types of inflammation (swelling) as seen in the skin, such as arthritis in the joints. Some people who have psoriasis are at increased risk of developing diabetes and cardiovascular (heart) disease. Healthy eating and exercise can help lower this risk. However, there may be many factors involved in the links between psoriasis and other health conditions and it is an area of active research.

Psoriatic arthritis 

Psoriatic arthritis (sometimes shortened to PA or PsA) can make the joints swollen, stiff and painful. Not everyone who has psoriasis will develop psoriatic arthritis and not everyone who has psoriatic arthritis will have the skin condition, but the chances are higher. The symptoms of psoriatic arthritis can change and be worse at certain times, but better at others.
 

Lola thinks she should have been told by her doctors about the chances of developing other conditions, like psoriatic arthritis.

Lola thinks she should have been told by her doctors about the chances of developing other conditions, like psoriatic arthritis.

Age at interview: 17
Sex: Female
Age at diagnosis: 14
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I remember thinking ‘I really don’t want this to be psoriasis because I know it’s never gonna go away.’ And I did feel a bit disheartened when they said, “This is psoriasis.” And they printed- out, on my first doctor’s appointment they printed out this massive leaflet and they said, “Do look at websites,” and it kind of-, they said it’s linked with heart diseases when you’re older. They didn’t tell me it’s linked with arthritis, they didn’t tell me it’s linked with depression, they didn’t really-, what was annoying is that we’ve kind of had to find out a lot for ourselves. They didn’t tell me the different types or- of psoriasis that there, or where I could like, they didn’t tell me where to look out for it in a way which is annoying because it’s kind of you’re finding out for yourself. So I think my main like annoying point is that I knew I could never get rid of it and it’s always going to be there and especially when I’m stressed, which is kind of handy knowing that like when my skin flares up I know I need to change something.
 

Dr McPherson talks about psoriatic arthritis.

Dr McPherson talks about psoriatic arthritis.

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So, psoriatic arthritis is similar to the inflammation you get in the skin. You can get an inflammation in the joints. And probably in about ten to fifteen percent of people you can get that inflammation in the joints. That can come before the skin, with the skin, after the skin manifestations, and it can happen in, you know-. It sometimes-, more often associated with nail psoriasis, so lifting of the nails or pitting of the nails can be seen in people with joint disease as well. And it's a destructive arthritis. So it's very important to get that treated by a rheumatologist, because there's inflammation in the joints, you can actually get destruction of the joints as well. And that would definitely be an indication for thinking about tablet treatments for psoriasis.
 

Sofia’s joints sometimes click but it’s not something her doctors are worried about at the moment.

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Sofia’s joints sometimes click but it’s not something her doctors are worried about at the moment.

Age at interview: 16
Sex: Female
Age at diagnosis: 6
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My joints click and stuff and I think there is a condition related to it. So yeah, it could be the reason, but I’m not sure. 

Is that something that you’ve talked to doctors about?

Yeah, but they, they said, it’s all right to click a bit, and they are not concerned.

So they are not too worried about it?

Yeah. Not yet, anyway.
Some people we talked to were unaware that psoriasis is linked with a form of arthritis. Instead, they thought of psoriasis as affecting only the skin surface and, for some, mental health. For those who knew about psoriatic arthritis, the news had often shocked them. Lola learnt about psoriatic arthritis and increased risks of heart disease only recently through internet searches. Finding out about these put Lola off and she “stopped looking so much” online.

No one we talked to had been diagnosed with psoriatic arthritis, but a few had experienced difficulties with their joints and thought it was a possible explanation. Sofia has clicking joints but isn’t worried about it at the moment. There was uncertainty for some about whether they would develop psoriatic arthritis in the future. A few people knew of others with psoriatic arthritis and were aware of the impact it can have in terms of pain and mobility.
 

Hannah says psoriatic arthritis is an extra worry that most of her peers don’t have to think about.

Hannah says psoriatic arthritis is an extra worry that most of her peers don’t have to think about.

Age at interview: 24
Sex: Female
Age at diagnosis: 16
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And you mentioned about psoriatic arthritis and joint pain earlier.

[mmhm]

Is that something that's been relevant to your experience?

Yeah, that, I've have not had any symptoms of that, but it's something that really worries me. And I think most people with psoriasis, if they've done their research, know that they are more likely to get psoriatic arthritis than like obviously people who've never had psoriasis before. So I always live in fear of that because psoriatic-, psoriatic arthritis tends to not come that late in life, it’s not something that affects like 80 and plus people. A lot of people on the forums were experiencing psoriatic arthritis as early as 30 and it wasn't just the odd case, there were quite a few people. So that really worries me. And it's something I do often think about, like I kind of always sort of check my joints and, you know, try and notice if there's any like pains in my body. And I think that most young people probably don't think about every little ache and pain and every time they've pulled something, as much as maybe you would if you had psoriasis and you were aware that psoriatic arthritis could, you know, be coming.

Is that something that you talk to your dermatologist or your GP about?

I feel like I probably would have mentioned it once, but then they just say you know, “We'll cross that bridge when we come to it.” And there's, you know, you, “There's no guarantee you will get it.” You know, you're more likely, but then you know you’re more likely to get heart disease apparently if you have psoriasis and all the other kinds of things. So, with autoimmune like drugs, like with immune like system drugs, you’re more to get loads of things. So it's kind of like hard to kind of keep dwelling on what you, what you could get, because it's just such a long list. 
 

Megan’s had some difficulties with her ankle which her doctor thinks might be related to psoriatic arthritis.

Megan’s had some difficulties with her ankle which her doctor thinks might be related to psoriatic arthritis.

Age at interview: 16
Sex: Female
Age at diagnosis: 7
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Are there any other sort of health conditions that you have that are related to psoriasis at all?

They're not sure if I have arthritis in my ankle, my right ankle, because I had to go to A&E, and because they looked on my medical they, cos arthritis and psoriasis are linked, they're not sure if I was getting arthritis in my ankle.

How did you sort of first notice that there's something different with your ankle?

I was sat on the sofa; I stood up and I couldn’t put pressure on it. And then I went to bed, and in the morning I couldn’t walk on it at all, and I was hopping around everywhere. And I went to the doctors, and they weren't sure if I'd done something to the ligaments or the muscle overnight, and we went up the A&E and they said they were going to do blood tests and everything, and then looked on my medical history and said that it's probably something to do with arthritis, and if it happens again to go back and they’ll do tests. 
 

Lucy learnt more about psoriatic arthritis through volunteer work with the charity Mind & Skin.

Lucy learnt more about psoriatic arthritis through volunteer work with the charity Mind & Skin.

Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I’m always aware of my joints and things, cos I know that psoriatic arthritis can be, you know, you can develop that if you’ve got psoriasis. But at the minute, I’m alright [laughs]. It’s just the psoriasis that I have. 

Is it something you keep an eye on or go for check-ups with or is it more just in the back of your mind?

Yeah, just in the back of my mind, yeah, I don’t really go for check-ups about that. But because of the stuff I was doing on Mind & Skin (charity organisation), I was invited to a board run by Celgene, a pharmaceutical company, about how to use like social media and with this drug that they’ve developed for psoriasis. And there was a doctor there, a rheumatologist who’s really interested in psoriatic arthritis and psoriasis together. And he was saying that psoriatic arthritis is far more common than rheumatoid arthritis, yet there’s so much more known about rheumatoid arthritis. So that made me a bit more aware of it as well, just to be aware of how I’m feeling. And if I do see a difference, I’d go straight to the doctor and get it sorted, cos I know that I’m probably at a high risk through having psoriasis. So it’s good to be aware. But at the minute, I don’t have any, I don’t have it [laughs]. 
Infections

A few people remembered times when their psoriasis had been infected. This was especially a concern for Zara, whose psoriasis is on her feet and so she had to wear trainers when doing gymnastics because of the “bugs on the floor”. Going to public swimming pools and walking barefoot on grass was also a worry for Zara. She had to stop her Duke of Edinburgh Award because it was too much to walk all day and not be able to properly wash her feet afterwards. The psoriasis on Lola’s scalp became infected once, causing her lymph glands to swell. Others hadn’t had infected psoriasis but knew it was a worry when the skin was broken.
 

Zara says there have been times when she’s been almost constantly on antibiotics for psoriasis infections.

Zara says there have been times when she’s been almost constantly on antibiotics for psoriasis infections.

Age at interview: 16
Sex: Female
Age at diagnosis: 2
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I was probably on antibiotics for about seven or eight years, eventually I just said that, to my GP when they offered them to me that I didn’t want them because my feet would be, they’d go from absolutely horrible and I couldn’t walk on them to almost, you know, they were pretty comfortable and I could walk fine and then as soon as you stop the course of antibiotics they went straight back downhill. So it just felt worse and worse so I just decided to just live with the pain.

And did you stop?

Yeh I stopped the antibiotics.

Had you been on them sort of continually or were they sort of kind of periods of treatment and then on and off?

I went through a phase of like I was just continuously on them.

Okay.

But most of the time it would be like I’d be on them for a week or two.

And then I’d have another week off them and my feet would go downhill and after about two or three weeks I just couldn’t walk again so we’d go back on them. And I just decided I’d stick with not taking them. 
 

Carys found it hardest to have psoriasis on her hands because her job as a nurse meant that she was using/washing them constantly and that they were an infection risk.

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Carys found it hardest to have psoriasis on her hands because her job as a nurse meant that she was using/washing them constantly and that they were an infection risk.

Age at interview: 23
Sex: Female
Age at diagnosis: 22
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With me, my arms and my hands were difficult because I washed my hands so frequently at work that you would-, say you had four days off in between shifts, you would get it looking really, you know, feeling better and looking less angry and then you go back and you’d undo it within a few hours because you’ve washed your hands that many times, that there’s absolutely no way that you could keep them looking as good. 

Because I’d plaques on my hands and my wrists and things and that some of them broke open and at the time I didn’t, didn’t realise, but when I saw Occupational Health after all my treatment, they said that I shouldn’t have been working at that point. But, as soon as the plaques broke open on any of my skin that was like bare below the elbows that’s the NHS rules, they said I should have been off sick because I was an infection risk to myself and somebody else at that point. But I didn’t realise and to be honest didn’t think anything of it, because, because my, I didn’t have an infection. I didn’t think about it, about- which obviously didn’t sit well, cos I wouldn’t wanna put anybody at risk but I didn’t actually get any infections or anything. But I know for next time that if I was to get it again and they were to break open I’d have to be off if it was on my hands or on my arms broken. Cos my hand washing just made it worse like you know, you can’t help it. You have to wash your hands every five minutes. So the ones on my hands just never-, were probably open a lot of the time really when I think back. 
Mental health

For some, having psoriasis had a negative impact on their mental health. This includes those who experienced depression and anxiety. You can find out more in these sections about the impact of psoriasis on mental health and support.
 

Hannah thinks there are particular mental health issues related to having a skin condition like psoriasis.

Hannah thinks there are particular mental health issues related to having a skin condition like psoriasis.

Age at interview: 24
Sex: Female
Age at diagnosis: 16
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It's definitely worth talking to a counsellor if you can and either going through your dermatologist and talking about the fact that you'd like some support or like looking for it independently if you don't feel like you need someone who deals with specifically skin conditions. But I felt like it, that one session that I did have it was nice to speak to somebody in the hospital at the same time as going for an appointment. And somebody who I know deals specifically with skin conditions because I do feel like it's a different kind of depression because it is linked so much to how-, to a condition and how you feel about yourself. And it's not abstract like you don't know why you are upset. You know why. And you, you have this root cause and it's about dealing with something that you might have for the rest of your life and you probably will and you'll probably be trying things for it forever and it's about coping with that. And I think that it's completely normal to find it hard to cope with the idea of having something forever. Even if it isn't gonna to kill you, it's still hard to cope with the idea of something might never go away fully. So it's worth talking to someone. 
 

Psoriasis contributed to Adam’s depression, anxiety and Obsessive Compulsive Disorder, which had a big impact on his university studies.

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Psoriasis contributed to Adam’s depression, anxiety and Obsessive Compulsive Disorder, which had a big impact on his university studies.

Age at interview: 24
Sex: Male
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When I first had the breakout, so I was in first year and it was about two months before like final exams of first year. I locked myself away in my room for most of it. I wouldn’t go to classes. I wouldn’t really go to the shops. I wouldn’t go out clubbing or anything like that. And I ended up missing my exams. The university were very understanding. I kind of explained to them that I was seeing a counsellor at the time stuff like that, who kind of wrote a letter that I had anxiety and all those things. And then they ended up letting me do resits. So that was fine, kind of. It wasn’t fine or ideal, it was. Sometimes it kind of screwed me over. But I wouldn’t go, I don’t, even today I’ve made decisions not to go places because of my skin, how I feel about it. 

I just remember being so obsessed with it at the time. I had to go and see a counsellor because of it. It triggered like so much depression. I had really bad anxiety. I didn’t go to my exams in first year because I couldn’t physically sit in a room with people or study or anything like that. So it just threw me so much and it, and, because it wasn’t, it was no longer manageable. So I never, it never really fazed me when I was able to manage it. But all of a sudden I felt hopeless. And I was just like, “This is what my body’s going to look like for the rest of my life, if not get worse.” So I, I just, I just, it kind of sent me almost OCD about it. And I used to try, I mean which probably also wasn’t good for my skin at the time, but I was just desperate to be like proactive in kind of like getting rid of it. That I would put one thing on in the morning, so I’d shower, and then I would drape myself in all the moisturisers, then I would put something on. Three hours later I would go and shower, drape myself [laughs] in all the moisturisers, put something new on. Then, and I would just do this throughout the day, different things. Like five times a day I would shower and then cover myself in the moisturisers. I used to go to bed having draped myself in moisturisers in the hope that like it would give my skin so much moisture or something like that, that I would wake up and it would be gone. I would wake up being like really slippery and soft, have a good shower. And I would just do this ritual. 
Other complications/health issues

A few people had complications with their hair from having psoriasis on the scalp. This included hair loss and thinning for Megan and Sofia, because the psoriasis built up and weakened their hair follicles or pulled out the hairs. Lucy and Carys also found that “clumps” of hair would sometimes come out.
 

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

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

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 built up in Ella’s ear canals when she was younger, causing some temporary hearing loss and earaches.
 

Having psoriasis in and around her ears caused complications, including temporary hearing problems, for Ella.

Having psoriasis in and around her ears caused complications, including temporary hearing problems, for Ella.

Age at interview: 16
Sex: Female
Age at diagnosis: 3
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I think around when I was 13, 14 was when it was in my ears most, and I have quite small, like unusually small ear canals, so with the psoriasis in there it would like get really, really blocked up and I wouldn’t be able to hear very well, like I would be partially deaf like in my ears. So, they tried a load of ways to try and get that out from drops, I had quite a lot of ear drops, to ear washes which was when they like-, I don’t know what they did, but I think they like poured water in my ear to try and get it out, but we found that made it worse. So, I don’t know exactly what it was called but I used to like go to the hospital quite a lot- to [hospital name] and I would get, they would like [laughs], I don’t know what it is without making it sound a bit weird, but they would like suck it out with a little like tube. They'd like-, they'd suck out all the excess like psoriasis that was in there to like-, and like as soon as that was-, that happened like I could hear like perfectly fine. It would-, everything would seem really, really loud because I'd been living with like being like partially deaf. So, yeah, I would go for that like every like two months or something to get it cleared out cos it was quite bad, all the while like doing the drops and everything. And then now as I've come into college, and at the end of the end of secondary school it's been fine; I have nothing in my ears anymore, and fingers crossed it doesn’t come back because I think that was one of the worst-, cos it would be quite painful in there. Like, when it would get blocked up, I'd get quite a lot of earaches and ear infections.
Some people found their psoriasis interacted with other health conditions they had, such as:
  • acne: Lucy and Ella found their psoriasis interacted with their acne as acne-treatments can make the psoriasis worse and vice versa
  • health conditions which add stress: this includes Zara’s epilepsy and Abbie’s Irritable Bowel Syndrome (see also sections on triggers)
  • hay fever: Lucy takes antihistamines for hay fever and pointed out the benefit that they help reduce the itchiness of her psoriasis.
 

Ella finds acne treatments dry out and irritate her psoriasis, whilst psoriasis treatments are greasy on her acne.

Ella finds acne treatments dry out and irritate her psoriasis, whilst psoriasis treatments are greasy on her acne.

Age at interview: 16
Sex: Female
Age at diagnosis: 3
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It can get-, and so it's hard, so like if I'm trying to treat my acne and my psoriasis at the same time then it's like I have like two things to worry about; like most people just like, they're trying to keep their acne under control – well I have to keep my acne and my psoriasis under control which are like two different- two different things to worry about. So, if I'm trying to like scrub my face to help my acne, to exfoliate my face, then that can sometimes like not be very good for my psoriasis. So, it's just trying to keep that balance, like do I want my psoriasis to be really good or do I want my acne to be really good; it's like trying to find that in-between stage where both are like kept under control.

The creams can be quite greasy. I do have one which is like more of a like a creamy texture rather than my other ones which are sort of more like gel like so they're translucent, but they can be really greasy which is like when I'm trying to moisturise my face as well, for my acne I've had some trouble with that because obviously it's not the best to have greasy like-, have grease, like as soon as I moisturise my face I have to put the gels on so it can be really greasy.
Hannah pointed out that she can’t have live (attenuated) vaccinations whilst on biological injections.
 

Hannah can’t have live vaccines whilst on biological injections, impacting on where she can travel in the world.

Hannah can’t have live vaccines whilst on biological injections, impacting on where she can travel in the world.

Age at interview: 24
Sex: Female
Age at diagnosis: 16
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Travel is something I've only sort of started thinking about now because it's only on biologics where you can't have live vaccines. And I only started Stelara in December, I hadn't had any plans to go traveling until now and I want to go away to South America. But some areas you need the yellow fever vaccination which is live so there was some restrictions there. And I think that that is really difficult when you’re young. I mean I am getting to the stage now when I am going to go into full time work, so it's not as much of a factor. But definitely for people thinking about taking gap years, or like going away after school and uni and things that, you know, it is like difficult to have to factor that in. And also even without the vacc-, if you put the vaccinations aside, just the fact that you have a lower immune system and you’re going to countries where you know, like food isn’t as clean and water is-, and like you know the conditions make you feel like you’re more likely ill to get ill, so you kind of tend to worry about things as if you’re like an elderly person because you know that your immune system you know might not be able to handle it and you’re more susceptible to getting ill than the rest of your friends would be. 
A couple of people had emergency hospitals visits and stays. Emergency hospital visits are different to ‘normal’ appointments with a dermatologist and happen when there is a serious problem, such as a serious infection or heavy bleeding. Ella and Zara had been admitted to hospital for emergencies with their psoriasis when they were very young.
 

Zara went into hospital when she rubbed her psoriasis so hard that it wouldn’t stop bleeding. Her skin was cleaned up and wrapped before she was allowed home.

Zara went into hospital when she rubbed her psoriasis so hard that it wouldn’t stop bleeding. Her skin was cleaned up and wrapped before she was allowed home.

Age at interview: 16
Sex: Female
Age at diagnosis: 2
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I know I spent a lot of time in hospital. We never really spoke in much depth about psoriasis when I was younger. I do have one memory, I’m not sure how old I was but my foot was extremely itchy and so I itched it on the carpet in my bedroom and this, I don’t know, blood just kept coming out and I don’t know I just, I came out into the dining room and mum and dad were there and so they took me straight to the hospital and it was a bit of a nightmare cos the first hospital we went to we weren’t accepted to or something so I remember getting back in the car with dad carrying me back in the car and driving to another hospital and my foot just wouldn’t stop bleeding really. Yes that was, that was quite scary, it was a long day as well I think I was probably about four to be honest. 
 

Ella stayed in hospital for about a week. She remembers being frightened.

Ella stayed in hospital for about a week. She remembers being frightened.

Age at interview: 16
Sex: Female
Age at diagnosis: 3
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When I went to hospital I was about three. Just before I'd-, just before I was starting primary school so maybe like four, about three or four. And it was because I-, they put me on a-, I think it was a tar-based cream they were trying out and that didn’t react well with my skin at all and it really flared up. And I think-, can't remember exactly, but say that [holds up palm] is one percent of my body, it was sixteen percent that was covered with psoriasis, so if you look at that, that’s quite a lot. So I went to hospital and I had to have these sort of bandages sleeves that they would put cr-, they would put cream on and then put- put it like on my arms so that I have it on my arms or my legs and then on my body as well, and I really remember that, like having that underneath like my nightdress. And I think-, I can't remember exactly why I was there but it was because my psoriasis had got really bad, but I think also they wanted to put a, an IV drip into my hand, and. I can really, really vividly remember them not being able to find like a vein to put it in, and so they tried to do it in both of my hands and both of my feet, like failing each time. And I remember just finding that completely terrible and then I got really scared of needles because of that. 

Like that being quite a traumatic memory, obviously I'm fine with it now; I'm fine with needles. And it probably wasn’t as bad as I remember but, yeah, that was quite hard, especially because I was in a place I didn’t really know, like my parents weren’t allowed to be there all the time. And they’re coming up with needles and it wasn’t the most-, for a three year old that can be quite traumatic. I think, yeah, I probably am blowing it out of proportion because of what I can remember, but still that was quite a traumatic like memory for me. 
There’s also information about some additional health aspects related to psoriasis in other sections, such as: 
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