Louie

Age at interview: 16
Age at diagnosis: 13
Brief Outline: (Text only clips) Louie has had psoriasis since age 13. His confidence was knocked at first but he now feels less self-conscious. Louie has tried lots of treatments and thinks it’s important that doctors consider the impacts of these on young people’s wider lives.
Background: Louie is 16 years old and a school student. His ethnicity is White English.
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Louie has had psoriasis for about 3 years. He first noticed a small patch on his chin but didn’t think much of it until he also had some skin flaking from his scalp. He saw his GP and was initially told it was ringworm (a fungal infection). He saw another GP 6 months later because the skin patches had got bigger and the creams weren’t working. The new GP diagnosed it as psoriasis and Louie remembers feeling really distraught when he learnt that it is a life-long condition. His psoriasis isn’t painful or itchy, and the main impact for Louie is the physical appearance making him feel self-conscious. Louie’s psoriasis has affected most parts of his body. He finds it especially hard to have psoriasis on his scalp as he worries about what others might think of the skin flakes. For example, he sometimes feels quite embarrassed about flakes on his school blazer and tries to discretely brush them off. He used to also avoid wearing dark-coloured clothes and prefer long-sleeved shirts when he felt very self-conscious, but now is less concerned about this.
Louie has tried lots of prescribed creams and ointments for his psoriasis but found many were off-putting to use. For example, they can be smelly or leave a “shiny glaze”, which Louie worried would draw attention to him. One ointment for his scalp was very runny and took a long time to dry, meaning that Louie would have to get up earlier than usual for school. He didn’t notice an improvement and prefers to use shop-bought shampoos now. Since being referred to a dermatologist, Louie feels more hopeful. He’s due to start taking methotrexate (immunosuppressant tablets) soon and is optimistic that it may work for him. Louis had a good experience with the dermatology doctors and nurses when he went for phototherapy (light therapy) and he felt comfortable if he had to go to some of the sessions on his own. This was sometimes the case as it is tricky for Louie’s parents to get the time off work.
Having psoriasis has made Louie feel depressed and anxious before. He felt like he lost his confidence and stopped socialising or taking part in sports. For example, he used to do competitive swimming but found it difficult having his skin visible. He wore a vest for PE classes as he wanted to cover his skin, but this often drew more attention and people would ask questions. Stress is a trigger for his psoriasis and this can become a vicious cycle. It was difficult when Louie’s psoriasis returned after light therapy as it was during the time that he was also sitting his mock GCSEs. One way that Louie tries to cope with stress is by talking to supportive friends and family. He recently stopped wearing the vest for swimming, a decision he was very nervous about but ended up being “a liberating feeling and quite a relief that I could just go back to how I was before”. Louie also feels that, now he is a bit older, looks matter less when looking for romantic relationships.
Louie says that having psoriasis can make you think and behave differently, but that you should “keep your head up high” and take part in activities that you enjoy. For Louie, going to football matches is “an outlet” which helps him to “be myself again” as he doesn’t think about his skin so much. In Louie’s experience, his friends and family have been incredibly supportive. He didn’t want to tell his friends at first and he didn’t like it initially when his mum looked online about psoriasis, but eventually came to realise that they had his best interests at heart. Louie has since also researched on the internet about psoriasis and learnt, for example, that fragranced bath and body products can aggravate psoriasis. Since cutting these out, he’s noticed that his skin tends to be less red and irritated. Louie encourages doctors treating young patients to “get into the frame of mind of the child and realise how it’s affecting them”. This includes being aware of how psoriasis impacts the many “little things” that are normal in other people’s lives.
Louie has tried lots of prescribed creams and ointments for his psoriasis but found many were off-putting to use. For example, they can be smelly or leave a “shiny glaze”, which Louie worried would draw attention to him. One ointment for his scalp was very runny and took a long time to dry, meaning that Louie would have to get up earlier than usual for school. He didn’t notice an improvement and prefers to use shop-bought shampoos now. Since being referred to a dermatologist, Louie feels more hopeful. He’s due to start taking methotrexate (immunosuppressant tablets) soon and is optimistic that it may work for him. Louis had a good experience with the dermatology doctors and nurses when he went for phototherapy (light therapy) and he felt comfortable if he had to go to some of the sessions on his own. This was sometimes the case as it is tricky for Louie’s parents to get the time off work.
Having psoriasis has made Louie feel depressed and anxious before. He felt like he lost his confidence and stopped socialising or taking part in sports. For example, he used to do competitive swimming but found it difficult having his skin visible. He wore a vest for PE classes as he wanted to cover his skin, but this often drew more attention and people would ask questions. Stress is a trigger for his psoriasis and this can become a vicious cycle. It was difficult when Louie’s psoriasis returned after light therapy as it was during the time that he was also sitting his mock GCSEs. One way that Louie tries to cope with stress is by talking to supportive friends and family. He recently stopped wearing the vest for swimming, a decision he was very nervous about but ended up being “a liberating feeling and quite a relief that I could just go back to how I was before”. Louie also feels that, now he is a bit older, looks matter less when looking for romantic relationships.
Louie says that having psoriasis can make you think and behave differently, but that you should “keep your head up high” and take part in activities that you enjoy. For Louie, going to football matches is “an outlet” which helps him to “be myself again” as he doesn’t think about his skin so much. In Louie’s experience, his friends and family have been incredibly supportive. He didn’t want to tell his friends at first and he didn’t like it initially when his mum looked online about psoriasis, but eventually came to realise that they had his best interests at heart. Louie has since also researched on the internet about psoriasis and learnt, for example, that fragranced bath and body products can aggravate psoriasis. Since cutting these out, he’s noticed that his skin tends to be less red and irritated. Louie encourages doctors treating young patients to “get into the frame of mind of the child and realise how it’s affecting them”. This includes being aware of how psoriasis impacts the many “little things” that are normal in other people’s lives.
Louie used to avoid wearing dark clothes because they showed up the skin flakes.
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Louie used to avoid wearing dark clothes because they showed up the skin flakes.
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So wearing things like dark clothing – I didn’t-, I frowned away from wearing black and navy for a while because I thought ‘oh it might leave like dandruff or flakes from my scalp on my clothes’ and I just got to the point I just thought ‘really like it’s not- not that big of a deal’. But the only thing that does still affect me a little bit is my blazer at school because it’s black. I sometimes find little bits of white scalp but only little fine bits on my blazer and I just shake it off, just do it discretely, just shake it off and it doesn’t really affect me anymore.
It was difficult for Louie to keep going back to the doctors in search of a diagnosis as his mum works full-time.
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It was difficult for Louie to keep going back to the doctors in search of a diagnosis as his mum works full-time.
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How long did it take for somebody to correctly diagnose it as psoriasis?
Had it for about-, I had psoriasis before someone correctly diagnosed me for about six and a half months, but I had difficulty going to the doctors cos I was young and my mother is a full time-, she works full time so it’s difficult to get doctor hours that correlate with my mums working hours.
So it was very difficult to go to the doctors unless it really got serious and that’s-, by the time it gets too serious it gets pr-, it gets to the point where it’s not easily as treatable because of the severity of it and so it was about six or seven months.
Did the doctors give you anything during that time for what they thought was the fungal infection?
They gave me a fungal shampoo of which didn’t seem to work because obviously it was doing the wrong thing it wasn’t close to be treating me and then they gave me just like a little steroid cream for my face but that didn’t work either.
And that didn’t work either so obviously I went back at a later date.
Louie says the ideal is when psoriasis is managed well and he’s hopeful it won’t always be a big part of his life.
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Louie says the ideal is when psoriasis is managed well and he’s hopeful it won’t always be a big part of his life.
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Louie says his dermatologist is understanding about the ways psoriasis affects him.
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Louie says his dermatologist is understanding about the ways psoriasis affects him.
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Louie fits emollients into his routine and finds using them helps his skin.
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Louie fits emollients into his routine and finds using them helps his skin.
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Louie finds there are lots of off-putting things about topical steroids. Some of these have an impact on school life for him.
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Louie finds there are lots of off-putting things about topical steroids. Some of these have an impact on school life for him.
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Louie stopped using a medicated shampoo because he was worried about it drawing attention to him at school.
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Louie stopped using a medicated shampoo because he was worried about it drawing attention to him at school.
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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.
Louie missed out on school classes when having phototherapy.
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Louie missed out on school classes when having phototherapy.
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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.
Louie wanted some more phototherapy sessions for some plaques on his stomach. It was very upsetting for him when his psoriasis returned.
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Louie wanted some more phototherapy sessions for some plaques on his stomach. It was very upsetting for him when his psoriasis returned.
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Louie talks about having friends to stay over and staying at other people’s houses.
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Louie talks about having friends to stay over and staying at other people’s houses.
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What about if you were staying over at somebody else’s house or if you’re going away for a weekend on a trip or a holiday?
That’s still quite a-, well not big issue but it’s a little issue, I do take pillows of which do have a white colour or a light colour of which you can’t see flaky, flakes on my skin or my scalp on it and so obviously I don’t get asked question and stuff like that. And I do make sure, I know it sounds weird but to someone with psoriasis you do sort of make sure where you sleep or where, where you’re staying is, is suitable. So for example say if you’re staying on a sofa and the sofa is a leather sofa – I do-, I don’t do it on purpose but if I do wake up before anyone else, I do brush things onto the floor and stuff like that. Just to make sure people don’t ask questions and I feel bad obviously if it’s someone else’s house that I’ve done that but it’s something that I can’t control and it’s just one of those things I’ve just learnt to live with. And yeah, that’s it really, so I do take my own pillow when I go to places but that’s probably about it, or I take my own sheets for a pillow when I go to places.
Louie didn’t like it at first when his mum would look online about psoriasis.
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Louie didn’t like it at first when his mum would look online about psoriasis.
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Louie’s siblings used to tease, but are now very supportive.
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Louie’s siblings used to tease, but are now very supportive.
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Louie removed photos from his Instagram account which had been taken before he developed psoriasis.
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Louie removed photos from his Instagram account which had been taken before he developed psoriasis.
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Louie’s unsure about the social life at university and how psoriasis symptoms and emotional impacts might affect it.
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Louie’s unsure about the social life at university and how psoriasis symptoms and emotional impacts might affect it.
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