Not everyone we spoke to had psoriasis while they were in education (school, college, sixth form, university), but those who had found it could cause extra problems and considerations.
Lucy thinks the age at diagnosis is important, with social and emotional impacts.
Lucy thinks the age at diagnosis is important, with social and emotional impacts.
Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I think I was diagnosed at a really sort of key time, because I was just about to go to secondary school. And I was very aware of my appearance and how I looked and things. And, I did find it very difficult. I found it more difficult then than I would now if I was just diagnosed now, I think. And I think, because, as a child or as a teenager, especially, y’know, I was going through school and I was working really hard on my studies, but then, y’know, I was interested in boys and I had lovely friends as well, but all of these things coming together and I thought well, and it was, it’s so difficult. You don’t really, you don’t know who you are or what you want yet, I didn’t anyway. I had no idea. And but now, at, at 24, I’m secure in a relationship and happy, you know, career wise and I think when you are happy like that and secure, you tend, well, in my, in my experience, I now feel better about my condition and feel that I can handle my condition better and keep it under control better.
Lisa talks about her experiences with having psoriasis at school, sixth form and university.
Lisa talks about her experiences with having psoriasis at school, sixth form and university.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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In primary I didn’t really pay much attention to it until my teacher mentioned it and then she would sort of let me take my moisturiser into the store cupboard and whenever I felt it was a bit itchy or I needed some moisturiser, she would just let me get up and go do that. In secondary, I was a bit more conscious about it so I would cover up like my arms and my legs and stuff and especially in the summer when I’d have a short sleeved blouse, I wouldn’t want to take my jumper off until absolutely necessary, even though my teachers were just like, “Yeah, you need to take your jumper off, it’s boiling.” I would just like, “No. No, I wanna keep it on.”
Sixth form was fine. Everyone seemed to just not notice. And at university they’re really understanding. Everyone’s so, so nice, like my lecturers don’t mind if I’ve got a dermatology appointment and I have to miss a lecture. And my friends that I lived with for a year, they were really supportive. So they, they knew that if it was really painful not to like mention it and dwell on it. And they, they said that they couldn’t really see it even though I was stressing that it was really visible and it was just like, “Yeah, we didn’t even notice it until you brought it up.”
Some of the issues people experienced include:
- symptoms, such as itchiness, or side effects from treatments made it hard to concentrate or take part in classes
Some found symptoms like red and flaky skin attracted unwanted attention from others. Lucy, Louie and Abbie said skin flakes used to show up clearly on their school uniforms. Lola sometimes gets distracted from her studies with picking at her skin. Being kept awake because of itchiness or discomfort had knock-on effects the next day (see also sleep). Side effects and the appearance of treatments can make people feel self-conscious. This can include the look as well as the smell of topical treatments and sunburn from phototherapy. For some, their social life at university was affected by their treatments, side effects and restrictions (such as not being able to drink alcohol when taking methotrexate).
The itchiness of psoriasis on her feet distracts Zara at school.
The itchiness of psoriasis on her feet distracts Zara at school.
Age at interview: 16
Sex: Female
Age at diagnosis: 2
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Once an itch starts it’s difficult to get rid of. And the more you itch it like your feet get redder and then your feet start to bleed. And it’s constantly there and it bugs you and you just, you’ve got to find some way of just forgetting about it. It’s like, it’s like having I don’t know a broken arm or something and not, and not being able to write and you always know that’s there so when you go into class you can’t write down the notes and it just becomes a lot more difficult.
I can, I don’t know, be in English or Maths or something and my feet would get itchy and I’d, I’d like I’d curl them up in my, in my shoes to try and stop the itch and try like release some of the pain and everything and when I did that I kind of zoned out and I’d miss just that part of the lesson which might have been key so I’d try and do algebra and she’d just explained it and I wasn’t listening, it was difficult.
Louie’s unsure about the social life at university and how psoriasis symptoms and emotional impacts might affect it.
Louie’s unsure about the social life at university and how psoriasis symptoms and emotional impacts might affect it.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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I am planning to go to university at some point because I’m quite an academic person but at first I was thinking ‘oh no, how am I supposed to fit in with uni life when I have psoriasis and I can’t go out clubbing, partying etcetera?’ and obviously that’s not what uni’s for but you do think about it when you’re thinking about uni. And I was thinking ‘arr no, that’s going to affect, that’s going to affect me’. But in actual fact there’s loads of other people out there that probably do have psoriasis and there’s loads of people out there that have problems and little things that do get on their mind and do bother them, but at the end there is always that one or two people that will accept you for who you are and they will embrace you as a person and it won’t really matter to them that you’ve got psoriasis or that you’ve got eczema, you’ve got anything like that. It won’t matter to them and they will accept you for who you are. And so I did think about that when I was thinking about going to university or college or sixth form etcetera and that did play on my mind but it doesn’t really affect me anymore.
Sofia was teased at school about her psoriasis.
Sofia was teased at school about her psoriasis.
Age at interview: 16
Sex: Female
Age at diagnosis: 6
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I’ve had psoriasis like everywhere on my body, especially on my head legs and arms.
It was the most difficult having psoriasis on my head because people always assumed it was dandruff or “nits.” This is why I have always been teased about it, even when I was 6 or 7 years old.
Could I ask a bit more about that, about being teased about it?
It then carried on throughout primary school and it led to me not having and proper friends in Year 6. I used to always regularly be told ‘oh you’ve got dandruff’. I always wished it had stopped… but it never did. Another time in Year 3, a boy told me “eww what is that red patch on your arm.” I used to be quite upset and cried many times because of having psoriasis.
- coping with triggers from studying, including stress about exams
Dietary triggers (including alcohol) were an issue talked about by some people at university. Russell finds his skin is more likely to flare-up if he’s been “up late, eating rubbish, getting stressed about work” but, at the same time, he doesn’t want to miss out on enjoying university life. An exception to having exam stress as a trigger for psoriasis was Steven who said “in fact it got better at one point during exam time”.
Russell finds his university life involves a number of psoriasis triggers, including drinking alcohol when socialising.
Russell finds his university life involves a number of psoriasis triggers, including drinking alcohol when socialising.
Age at interview: 20
Sex: Male
Age at diagnosis: 19
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But also being a male student, beer as well is a big contribution of yeast and once I’d sort of spoken to him and had this conversation it made a lot of sense and I did start to see a difference and there’d be times last year if, perhaps I, I don’t go out sort of every night I’m not one of those people but I do like to go out occasionally and stuff. And of a week perhaps where you go out once or twice, I went out twice and our sort of my staple drink was, would be kind of beer. I could see it over the next couple of day’s I’d wake up and I could see like the beginnings of a patch and maybe it was because I was more sensitive to it in terms of I was watching more what I ate. Because previously I’ve had quite a fast metabolism, I do quite a lot of sport and I’m quite active so I don’t, I’ve never really watched what I ate and my weights never really fluctuated – I think I’ve been the same weight for about five or six years and I’ve never really paid much attention to it so it could just be the fact that I was now slightly more sensitive to what I was putting into my system but I’m convinced now if I have a couple of nights out in a row or a couple of late nights in a row with maybe a night out with drinking interspersed in that, I can see it in my hands. just either in the beginnings of kind of a dry spot or something and so again it’s a little bit of a kick to drink some more water, have a few nights off, get some early nights, try and eat some good food over the next few days and to start moisturising again. And invariably that kind of keeps it at bay. the only thing that doesn’t at that point is sort of stress is the only other input that I can’t really have too much, well I can but at the same time I can’t, have too much of an influence on because there just seems to be so much going on all the time.
So how ever early a night, however well you eat and whatnot – there’s only so much it can do ‘cos I’m one of those people that can’t really say no to doing stuff so I still run around like an idiot, trying to do everything that I can but I wouldn’t have it any other way – I’d take a little bit of dry skin to kind of enjoy my university experience a bit more.
Some people had been bullied and experienced mean comments from other pupils at school about their skin. Other pupils use to stand on Zara’s feet, where she has psoriasis, which was painful. Abbie moved schools because of bullying. Sofia started wearing a hijab during secondary school and the teasing about her psoriasis stopped. Most people who had experienced hurtful comments said they came from other pupils, but a few had been from teachers. Being around other people (pupils and teachers) could be a source of worry for those who felt insecure about their skin. Simon has had psoriasis since he was 17 and thinks it can make you feel like “an easy target” and “an outcast”. The anxiety for Adam about his psoriasis was so bad that he missed university lectures and exams.
Ella remembers a time when hurtful comments were made at school about psoriasis on her ears.
Ella remembers a time when hurtful comments were made at school about psoriasis on her ears.
Age at interview: 16
Sex: Female
Age at diagnosis: 3
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I can't really remember much with primary school. I remember -, cos we'd all- obviously all had to get changed for PE, altogether, and I remember sometimes people like pointing it out or asking what it was, but I never remember really – in primary school, that is – never really remember getting bullied or anything for it. But in secondary school I did quite a lot because it was then when it was all in my-, all in my ears, like it would all get really like blocked up and I wouldn’t be able to hear, and like all in this part of my ear [gestures to outer of ear/cartilage] it would get quite crusted up and everything. So then obviously when I did PE then I'd have to put my hair back cos obviously I'd always wear my hair down otherwise to cove -, to try and cover it. But then I had to put my hair in a ponytail and I just remember these two girls like sat just behind me, like looking at it and pointing and like whispering about it. And I think it was just the one time that happened and these girls were not-, they were not very nice girls – like they had a reputation for not being very nice. And I just remember them pointing at it and whispering and going, "Ergh that’s disgusting; like does she not wash her-, wash herself or anything like that?" And like I've always been quite a confident person; like I always have no problem like going up to people, and I turned around, I went, "If you have something to say you should talk to me; I can explain what it is." I didn’t say in that nice a way [laugh] but you know I was quite angry with that. It was like there was no reason for them to do that; it's none of their business and it was just like a really mean thing to do. 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.
The emotional impact of his psoriasis affected Adam’s university studies.
The emotional impact of his psoriasis affected Adam’s university studies.
Age at interview: 24
Sex: Male
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And in those moments I’m like, “Why am I sitting here? Why am I even focusing on work? Because this really doesn’t matter. In the grand scheme of my life I hate my, I hate my body image.” So it used to really affect how I, like productive I was at university. I would have like weeks where I was like, completely stagnate and, and do barely any work because I felt so shit about how I looked. Then I’d have to make up for it in like the weeks where I felt really good. And then I’d have to really, really study really hard to do well. So to catch-up. Cos all of sudden I was like, “Oh, I look great. I feel great. Oh, life’s great. I wanna do great in my degree now.” And then it would be like, “Oh, I look shit. Oh fuck my degree.” And it then, it just was kind of an up-and-down kind of like situa-. And then I ended up doing well. But I could’ve kind of done well, been quite steady and been all right. But I did well having like done really shit, done really well, done really shit, done really well to make up for it. And that’s how I kind of ended up, like that’s how my degree carried for me. And it was directly linked, other things as well, but a lot of it was linked to, at different points, how I felt about my skin.
Louie stopped using a medicated shampoo because he was worried about it drawing attention to him at school.
Louie stopped using a medicated shampoo because he was worried about it drawing attention to him at school.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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So I’ve had Cocois on my head which was smelly. The shampoo, Capasal – it’s a tar shampoo, tar based shampoo – that is a bit smelly as well but it’s not as bad but still it can be, people could say, “Oh, what’s that smell?” and for someone with psoriasis and you being noticed that you’ve got something wrong with you, it really does dent your confidence. And if someone asks, you don’t wanna say, “Ah, it’s me – sorry,” and you don’t wanna explain the whole story, so. When I first had psoriasis I kept myself to myself a little bit and so obviously you don’t want people asking questions.
But stuff like they gave me certain treatments for my hair like Cocois which is a smelly substance and I just said to them, “Look, if I’m going to school in the morning I’m not gonna want my hair stinking of something,” and I just stopped using it off my own back cos I don’t want to be at school and have people going, “Oh, what’s that smell?” and me having to explain. So I just stopped using that which probably if I did use it would have helped me but it’s just one of those things that I don’t think doctors realise that you have to be practical, the medicines have to help and they have to be practical with what you do in your everyday life.
Some found there wasn’t enough time in the mornings to use topical treatments before going to school/lectures, especially if they had to wait a long time for the cream to absorb before putting clothes on. A few people took emollients to classes to apply during the day, but it wasn’t always easy to find somewhere comfortable to put them on. Megan couldn’t go on her residential trip when she was younger because she needed her mum’s help to apply the creams. During a flare-up, Russell keeps a bottle of moisturiser on his desk when he’s studying at home to use throughout the day. Some people pointed out that topical treatments can be greasy, making it difficult to write or type. Jack didn’t have much of a treatment routine whilst at university but finds this is easier now he’s working.
Ella thinks doctors are sometimes unaware about the impracticalities of treatments in young people’s lives.
Ella thinks doctors are sometimes unaware about the impracticalities of treatments in young people’s lives.
Age at interview: 16
Sex: Female
Age at diagnosis: 3
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I think one of the things that I've always had is the doctors going, "Right, here's your creams and you have to put them on twice a day, every day, you have to use these certain shampoos, these certain soaps and everything like that, and you have to use them." And I think while obviously they know exactly what they're talking about, it can be difficult to- to do exactly what they say, like I probably should be putting my creams on twice a day, every day, but I only put it on once a day because I literally don’t have the time in the morning to put them on in the morning, and if I did put them on in the morning then my skin would not feel very nice – like it would feel greasy especially on the places that I put it, especially on my face. If I was going to try and put my cream on and then put my make-up on, like I would have greasy skin for the rest of the day and that’s not something that I really want to deal with. So, I think doctors, while they do know what they're talking about, they should think about how the treatments are going to affect the patient's day-to-day life. Like some people don’t have the time to- to do like what the doctors have told them, twice-, if they have to do it twice a day – they don’t have time to do that.
Sofia’s doctors wanted her to use steroid creams several times a week, but she found it too time-consuming and messy.
Sofia’s doctors wanted her to use steroid creams several times a week, but she found it too time-consuming and messy.
Age at interview: 16
Sex: Female
Age at diagnosis: 6
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They said three times a week. Yeah, but I never used to like follow the guidelines. I used to do it like once or twice a month, that’s why it didn’t really have a good effect.
It’s like quite hard to handle especially on schooldays, cos I can’t wake up early and like shower. So that’s why I used to avoid using them during schooldays. So that’s why I only had like the weekends to use it.
Cos if I have to apply it every day like it stains a lot of my clothes and bed sheets and then I have to keep on changing my clothes and stuff. And like, once they’re stained they don’t go away, even after washing. So, yeah. Like it would be more, better if there was like a treatment, like you could have a cream plaster so it doesn’t stain clothes and stuff.
Being cold when putting on topical treatments was an issue for Adam when he lived in student accommodation.
Being cold when putting on topical treatments was an issue for Adam when he lived in student accommodation.
Age at interview: 24
Sex: Male
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Applying ointment’s not fun when it’s really cold in the winter. And I used to live in student, like with students and it used to be dreadful like when people wouldn’t put the heating on. And I had to sometimes sit naked and apply an ointment to my body. And I used to hate it, having to do that, because I’d be freezing cold in this flat. And that wasn’t very enjoyable. And I’d sometimes put it off because of that. And then you could be quite uncomfortable as well with an ointment on. Like when you, and then cos it was so cold I’d have to put like pyjamas on or something like that, get into bed, and it wouldn’t be the most comfortable sleep. And once I was asleep it was fine. But it was getting to sleep, you could feel it all over you.
And, but, so that wasn’t always great, that kind of routine when I kind of like couldn’t afford heating. Or, or you had to, the politics of kind of like I wanted the heating on and part. And also like, I used to, the people that I used to live with like having a warm flat was important to me because of my skin. But I, and I don’t think I, well, I d-, well, again I didn’t wanna be like we’ve got all put the heating on like today unless they, like I just wanted it on occasionally. Because I’d be in a really cold flat and I know that the cold’s not good for my skin and it makes it break out. And then it also means that I don’t wanna treat my skin so easily because it’s a really uncomfortable experience. So that wasn’t so great. But then now I live with my parents where it’s like warm all the time, where if I want to I can like walk around in like just my tracksuit bottoms and like no T-shirt on. And if I thought, “I’d better treat my skin” or something like that, I can go up and put it on and just go and sit down and no, no one will batter an eyelid or anything like that. So it means I’m probably more active in terms of looking after my skin than I was when I lived in this like freezing cold flat where it was just like, one, it was bad for my skin in the first place and, two, it was then very uncomfortable to treat my bad skin.
Missing out on lessons was a big worry for those who had exams coming up, such as for Zara and Louie. Those who had phototherapy usually went for sessions 2-3 times a week. Appointments were sometimes scheduled so that people didn’t miss out on too much school or university, but it wasn’t always possible. Adam’s phototherapy appointments were timed so he could go on his way home from lectures. Damini waited until her summer holidays before starting phototherapy so that it didn’t interrupt school.
Louie missed out on school classes when having phototherapy.
Louie missed out on school classes when having phototherapy.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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Did you have to take any time out from school to get to your appointments?
Yeah at some points, for example some of my light therapy was during say it was 2 o’clock and I finish at 3.15 so I would have to take the last period off to get there and get back and etcetera so I wouldn’t have to-, it wouldn’t really be a thing for me to come back in. But if you are, if you do have psoriasis and you look at it ‘oh I’m gonna get time off school, that’s great’, do not look at it like that, you need to be at school because I have missed out on quite a lot of learning because of it and now I’m feeling it a bit now because I’m having to revise and study a little bit harder than everyone else. But if you, if you do have the opportunity to do it outside of school hours go to the appointment or book appointments at that time because it is helpful to you and it should be beneficial to you. And yeah, so I did miss quite a lot of school – not a considerable amount but a little bit of school which in important years is- a little bit is worth a lot. And so I did miss a little bit like I missed afternoons, I missed first periods and I missed first like registration, I missed assemblies and stuff like that. But yeah, so I did miss quite a decent amount of school.
Lucy didn’t like going to phototherapy without make-up on in the mornings.
Lucy didn’t like going to phototherapy without make-up on in the mornings.
Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I had my first course when I was at sixth form and I would go about half seven on a morning, I’d get the bus to the hospital, which is quite near me anyway. Go on a morning and then go to college. But then, you can’t wear any deodorant or perfume or anything or make-up in there. So I always hated going on the bus with no make-up on [laughs]. It was awful. And then I’d get in and then put all my make-up back on in the hospital toilets and sometimes I’d be late for my first lesson and stuff. And there’s a bit of a faff on. But, I saw such a difference in my skin. It was, it was amazing. It was like, it was the first thing that really, really worked. And I loved it. And it warmed me right up on a morning [laughs] so that was nice.
- extra support – including for exams, on school trips and during classes.
Zara had lots of time off school and appreciated the support she received when she went back. She could go to a place to unwind, catch up on work, take off her shoes and “then [the school will] introduce you back into lessons”. Some people thought it would be good to have more support with catching up on missed classes. Louie says some of his teachers are understanding and he can talk to them about how his psoriasis affects him. He trusts that they won’t share what he says with other students or teachers.
Lucy has some advice for school teachers about how they can support students with psoriasis.
Lucy has some advice for school teachers about how they can support students with psoriasis.
Age at interview: 24
Sex: Female
Age at diagnosis: 11
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To be understanding. To be very understanding, because sometimes, cos teachers are very busy. Everyone’s very busy, you know, and doctors, teachers are very busy, but it’s so important to be understanding. And, and children are so sensitive. Pupils are so sensitive. You know, teenagers are so sensitive. The slightest thing you say it can really bother them. And it’s so important to be understanding of children’s conditions. And if you’ve got a child in your class with psoriasis or with acne or with eczema or any other condition, research it. You know, if you’ve got a list that says, “This is what they have”, don’t just accept it, research it and find out about it. Find out how you can help them. If it’s better for them to have a cool classroom, open the windows. If it’s better for them to have a warm classroom, close the windows, y’know. If, if they’ve got psoriasis, it’s often shirts can rub. You know, if they wanna loosen their ties or take their blazers off, research ways in which you can help them in the classroom with their condition. And I think, PE teachers as well have an even bigger responsibility, because it’s, you know, with body image and things like that, even if you don’t have a condition like this, it’s difficult for, for a lot of children to do PE and to wear the PE kits and things. So, for PE teachers, be understanding too and look into it. And if they’re doing swimming and you think it might affect their skin. Don’t go mad if they don’t do swimming, put them in a different class. It’s just, the key, I think, is understanding. And, and taking your own initiative to find out yourself. Don’t ask the child, find out yourself. And a website like this is a brilliant way to do it [laughs].
Physical Education (PE) classes were talked about by lots of people. Some couldn’t take part regularly because their psoriasis was too painful or because they felt self-conscious about others seeing their skin. A few people were allowed to wear different clothes, such as Zara who wore trainers to protect her skin when the other pupils went bare foot. Megan changed in a separate room because “I was scared they’d see my skin”. Swimming was often avoided because chlorine can be a trigger. A few people had requested not to take part in PE lessons: some said their PE teachers understood this, but others didn’t feel they were supportive.
Lisa thinks there’s a lack of understanding about psoriasis, which adds to the emotional impact. She had a bad experience at a swimming pool.
Lisa thinks there’s a lack of understanding about psoriasis, which adds to the emotional impact. She had a bad experience at a swimming pool.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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Can you remember when that sort of impact on self-confidence started for you?
Probably when I started secondary school. Although my friends were they, they knew, cos they, they’d known me for a while. They didn’t really mind. Cos they just looked past it. But I sort of never liked to get changed in front of them for PE and the-, I don’t think the PE teachers quite understood so they were just like, “Yeah, everyone’s gotta get changed in one place.” And especially when I went swimming in primary school and secondary school, they- I didn’t feel like I wanted to do it. So often I would write notes saying, “My mum said that I can’t do it today.” And try and get out of it that way.
Did that work or-?
Yeah, most of the time. But it meant that I couldn’t swim, so yeah. And then I tried to learn how to swim when I got a bit older. But then, you’d go to a swimming pool with a swimming costume and all of your skin would be showing pretty much. And then, you’d have the lifeguards come up to you and be like, “Are you safe to go in the water?” So, it’s just like ‘why bother?’
How would you deal with that situation if somebody like the lifeguard asked you that?
I just tried explaining, cos I was with my dad anyway, so he helped explain that it was safe. It’s not contagious. Cos I don’t think people know that it’s not contagious.
There were lots of positive experiences about school and studies too. This includes: supportive friends; meeting other students with psoriasis; enjoying classes and extra-curricular clubs; and feeling good educating others about psoriasis. Megan and Lucy focused on psoriasis in their assignments to raise more awareness and understanding about the condition. A few people learnt more about psoriasis through their studies. Ella and Sofia found biology lessons helped them understand psoriasis. Louis is a medical student and feels his experience helps him to better appreciate the ‘patient experience’ of skin conditions. Lisa used her university library access to look up some medical articles on psoriasis causes and triggers.
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