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Sofia

Age at interview: 16
Age at diagnosis: 6
Brief Outline: (Text only clips) Sofia was diagnosed with psoriasis at age 6. She feels that she wasn’t given enough information about her condition as she grew up. She thinks that healthcare professionals should take more time to explain the condition and available treatment options.
Background: Sofia, aged 16, is a sixth form student. Her ethnic background is British Pakistani.

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Sofia was diagnosed with psoriasis when she was 6 years old. Patches of psoriasis started on her legs, but soon spread onto other parts of her body including her scalp, arms, and face. She finds that the psoriasis on her scalp is particularly difficult to treat because it is harder to reach with topical medication. She thinks that genetics (particularly on her father’s side) may be one reason why she has psoriasis. Sofia is more comfortable when she covers her psoriasis with her clothing (e.g. long-sleeved tops). Sofia was often teased for having psoriasis by her peers at school. This has a big impact on her confidence and self-esteem. At age 14, she began wearing a hijab scarf which covers up her psoriasis and she no longer receives nasty comments.

Although Sofia began her treatment with a GP, the majority of her treatment is now led by dermatologists. When she was younger, she was prescribed moisturisers until she was old enough to start using steroids. She used topical steroid creams, but found that they were time consuming to apply and bleached her skin as well as her bedsheets and clothes. This meant that Sofia often skipped this treatment on school days and it lost its effectiveness. She then tried cyclosporine tablets, but decided to quit the treatment after experiencing side effects. Sofia has also tried alternative options such as Indian and Chinese herbal baths, but found neither of these options effective. She notes that although her treatment is currently covered by the NHS, she goes through her prescriptions quite quickly and this may become very expensive after she turns 18. Sofia is currently trialling a new daily gel treatment with higher doses of calcium for one to two months. Sofia’s advice to young people with psoriasis is to follow medical advice and to be consistent with treatment as this will make the condition manageable in the future.

Sofia has learned about psoriasis by visiting websites and reading information on the condition, potential treatments, and people’s individual experiences of psoriasis. She notes that although a lot of treatments are discussed online, a single treatment that is effective for everyone with psoriasis does not exist. Sofia was diagnosed at a young age and feels that she did not receive enough information from many of her previous doctors. However, she recently found a dermatologist who is caring and understanding, and takes the time to answer her questions. Sofia’s advice to healthcare professionals treating young people with psoriasis is to take more time discussing the condition and the available treatments, and to make sure that the young person understands this information. 
 

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.

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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.
 

Sofia encourages dermatology doctors to think about extra things they may need to do to support young people with psoriasis.

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Sofia encourages dermatology doctors to think about extra things they may need to do to support young people with psoriasis.

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I think as the doctors work with mainly older patients they should be more caring about the younger patients, especially cos they don’t have any knowledge about it. They should like take more time with… discussing the treatments with them and making sure they understand. Because when they were giving me the treatments, I didn’t understand anything, but my parents did. “They should try and explain in a way that a small child will understand and give the most effective treatments.”

Before I was too young to understand like what the doctors were really doing. But now I do understand, so I would like talk to them about it and like ask them questions. And this one that I’m meeting is just generally nicer. She’s a lot more caring as well. “I remember the previous doctor would just want to get rid of us and were unpleasant.”
 

Sofia’s doctors wanted her to use steroid creams several times a week, but she found it too time-consuming and messy.

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Sofia’s doctors wanted her to use steroid creams several times a week, but she found it too time-consuming and messy.

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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.
 

Sofia remembers her skin improving very quickly, just a few days after starting cyclosporine. She had to stop taking the medicine because of side effects.

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Sofia remembers her skin improving very quickly, just a few days after starting cyclosporine. She had to stop taking the medicine because of side effects.

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Last year I used to take tablets like Cyclosporine and it had a really good effect, but then it used to affect my digestive system. So, I couldn’t really like eat a lot and it just seemed like the tablet used to get like stuck in my stomach. This is why it affected my appetite and often my mood.

How long did you take the Cyclosporine for?

I think it was a few months until I stopped it. 

It’s for people who had kidney transplants so it was quite strong. That’s why I’m a bit scared about using it, but then, it had a really good effect within two or three days. So I would’ve continued using it if it didn’t have the side effects. 

Did your doctors tell you that you might get side effects with it?

Yeah, they did. And they were like it’s all right if you wanna stop using it, so I did.
 

Sofia was teased at school about her psoriasis.

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Sofia was teased at school about her psoriasis.

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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.
 

Sofia says it would be expensive if she paid for her prescriptions.

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Sofia says it would be expensive if she paid for her prescriptions.

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The treatment because I’m still under, I’m still 16 and like a student they don’t charge for the treatments. If I was over 18 and still wanting those steroids, they would like, I think, charge a lot. And they finish out quite quickly, it’ll take like two or three days to finish half a tube. 

Ok. 

And they’re quite expensive as well. 

So you’d have to keep going back for more.

Especially the Cyclosporine cos it’s worth more than hundreds of pounds. That’s why the doctor said, “Once you start, stop using the treatment again like can you please return any left over,” because they’re like worth a lot of money.
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