Abbie

Age at interview: 20
Age at diagnosis: 10
Brief Outline: Abbie was diagnosed with psoriasis at age 10. She recently finished a course of phototherapy which she found very effective. Abbie tries to remember that other people often don’t realise the negative impact that their comments about psoriasis can have.
Background: Abbie, aged 20, is an activity team leader. Her ethnic background is White English.
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Abbie was diagnosed with psoriasis at the age of 10, a condition which runs in her family. She has had patches of psoriasis on her knees, elbows, scalp, ears, and legs. She has found that stress and some foods trigger her psoriasis. She tries to keep her stress level down and avoid eating certain foods such as beef, tomatoes, dairy, and oranges. She has read about people’s experiences with psoriasis and searched for natural remedies online. However, some of the suggestions online conflicted with the views of her doctors. Abbie finds that her psoriasis can be itchy; she tries to keep scratching to a minimum by using anti-itch creams, taking anti-histamines, and keeping her bedding/clothing clean.
Abbie has tried a variety of treatments from her GP, such as steroid creams, steroid ointments, medicated bubble baths, cradle cap shampoo and petroleum jelly. Although some of these treatments were effective initially, she finds that they stop working with time. After two years of trial-and-error with her GP, she was referred to a dermatologist because the psoriasis on her scalp got worse. The treatment she was given at the dermatology clinic involved applying medication to her scalp and letting it sink in for a few hours before removing it. Abbie describes being “fed up” with ineffective treatments, and her dermatologist eventually gave her a referral for 30 phototherapy sessions. She finished phototherapy a few months ago and found it to be very effective for her psoriasis. Attending the phototherapy appointments twice a week was tiring because they were scheduled on her days off from work, but she says the results were worth the effort.
Abbie finds that healthcare professionals generally do not address the emotional side of having a skin condition. She notes that questionnaires given at specialist clinics do not fully capture the experience of living with psoriasis because their time frames are too short (e.g. one month) and don’t take account of seasons. She says that young females tend to be particularly conscious of their appearance and identity, and may therefore struggle more with a skin condition. She prefers to keep the emotional side of psoriasis to herself, although she has talked to a few close people in her life. She found it easier to talk about her psoriasis once her skin had improved. Other people have commented on Abbie’s psoriasis and she feels that they do not understand the impact and upset that those comments can have on someone with psoriasis. Abbie’s advice to young people with psoriasis is to consult healthcare professionals like GPs and dermatologists and to be open to trying new treatment options. She encourages young people to “stand their ground” in medical consultations and not agree to repeating an ineffective treatment. Abbie’s advice to healthcare professionals treating young people with psoriasis is to be more empathetic and to acknowledge the effects of psoriasis on a young person.
Abbie has tried a variety of treatments from her GP, such as steroid creams, steroid ointments, medicated bubble baths, cradle cap shampoo and petroleum jelly. Although some of these treatments were effective initially, she finds that they stop working with time. After two years of trial-and-error with her GP, she was referred to a dermatologist because the psoriasis on her scalp got worse. The treatment she was given at the dermatology clinic involved applying medication to her scalp and letting it sink in for a few hours before removing it. Abbie describes being “fed up” with ineffective treatments, and her dermatologist eventually gave her a referral for 30 phototherapy sessions. She finished phototherapy a few months ago and found it to be very effective for her psoriasis. Attending the phototherapy appointments twice a week was tiring because they were scheduled on her days off from work, but she says the results were worth the effort.
Abbie finds that healthcare professionals generally do not address the emotional side of having a skin condition. She notes that questionnaires given at specialist clinics do not fully capture the experience of living with psoriasis because their time frames are too short (e.g. one month) and don’t take account of seasons. She says that young females tend to be particularly conscious of their appearance and identity, and may therefore struggle more with a skin condition. She prefers to keep the emotional side of psoriasis to herself, although she has talked to a few close people in her life. She found it easier to talk about her psoriasis once her skin had improved. Other people have commented on Abbie’s psoriasis and she feels that they do not understand the impact and upset that those comments can have on someone with psoriasis. Abbie’s advice to young people with psoriasis is to consult healthcare professionals like GPs and dermatologists and to be open to trying new treatment options. She encourages young people to “stand their ground” in medical consultations and not agree to repeating an ineffective treatment. Abbie’s advice to healthcare professionals treating young people with psoriasis is to be more empathetic and to acknowledge the effects of psoriasis on a young person.
Abbie says scratching is “the worst thing to do” for psoriasis, but can give some relief.
Abbie says scratching is “the worst thing to do” for psoriasis, but can give some relief.
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And then yeah, but then you have to be careful because a lot of creams that you use afterwards it does make it -, it makes it worse, so like my, the top of my ears that was always quite thick and horrible, and I would sit there and I'd sit and pick it because I could, because it was there.
And that’s kind of result of it, it’s like, 'Oh I shouldn’t do this,' but there's that relief of just being able to scratch it and itch it, and it not feeling as thick and heavy.
Abbie feels some kinds of stinging might be a sign it’s clearing her psoriasis.
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Abbie feels some kinds of stinging might be a sign it’s clearing her psoriasis.
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Like it's burning it away, and maybe if I'm doing this and then it's just gonna ease it. I don’t know, it was a really -, it's a really weird thought but like the sensation of it, even though it stings a little bit, it's, it's nice.
It's really bizarre.
Abbie talks about the body parts affected, such as her legs where she gets big psoriasis plaques.
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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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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.
Abbie’s job means being outdoors a lot in the summer but she wasn’t confident showing psoriasis on her legs.
Abbie’s job means being outdoors a lot in the summer but she wasn’t confident showing psoriasis on her legs.
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Abbie’s dermatologist talked to her about triggers like stress and suggested some foods to cut out.
Abbie’s dermatologist talked to her about triggers like stress and suggested some foods to cut out.
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And see, but I haven’t seen any effect that these, what I'm eating every now and then, it's flaring up my skin so I'm just every now and then I eat it in smaller doses just in case.
Abbie talks about the medical help she had when she was younger.
Abbie talks about the medical help she had when she was younger.
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I can't really remember it because it was so long ago but obviously Mum took me in and they just give me steroid creams. I think it started off with the same that my dad had, just cos obviously he'd used it for so many years; then just over time that didn’t work so I was going back and forwards being given different steroid creams just to try until I got referred to go to a dermatologist, and that was mostly because of my scalp and because of the state that it was in where I had to go and have special treatment a few times a month where I'd sit there and they'd put in the cream. I'd have to sit there for a few hours while it settled in, then they'd have to sit and just scrape out all the loose bits.
Abbie says the survey questions aren’t always the ‘right’ ones to find out about the impact of psoriasis on her life.
Abbie says the survey questions aren’t always the ‘right’ ones to find out about the impact of psoriasis on her life.
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The cost of trying prescribed topical treatments added up for Abbie.
The cost of trying prescribed topical treatments added up for Abbie.
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Which can be an absolute pain over time.
Abbie’s tried lots of topical steroids without improvement. Her dermatologist wanted her to try more but Abbie pushed for phototherapy.
Abbie’s tried lots of topical steroids without improvement. Her dermatologist wanted her to try more but Abbie pushed for phototherapy.
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Well it was when I mentioned to her that I said that I wasn’t gonna try creams, and that’s when she turned to me and said, "Well, obviously the phototherapy, it probably won't work; it doesn’t work on everybody and we'd always try these creams first before we do the phototherapy," but she put me forward it for anyway and I was like, "Well if you say it's not gonna work is there any point in me doing it?" She was, "Well it's up to you," which didn’t really help me. So I did it anyway and then I had to go and see her not long ago and I was like, "Look, it's all cleared now." So it was kind of like, 'Aha to you,' but the way she made me feel that day wasn’t like the most positive cos I've, I told her that I'd tried everything, like even when I got referred by my doctor over winter he'd looked at the previous, my previous medical – everything that I'd been given for it and it was pretty much all steroids that could have been given, or creams, I tried over the last ten years.
Which is why I got referred.
Abbie found phototherapy helped her skin but going for sessions was tiring.
Abbie found phototherapy helped her skin but going for sessions was tiring.
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Abbie noticed her skin became pink after her phototherapy sessions increased, especially when she had been working outdoors. She found using after-sun helped.
Abbie noticed her skin became pink after her phototherapy sessions increased, especially when she had been working outdoors. She found using after-sun helped.
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Being bullied at school has had lasting impacts for Abbie. She works with children now and finds they can say hurtful things.
Being bullied at school has had lasting impacts for Abbie. She works with children now and finds they can say hurtful things.
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It's just that I don’t really want to go into much detail and explain it whereas, unless you, I really know them and I will openly speak to them, and I have had like comments like -, there has been jokes from little children before where they were just making rhymes with my name so, "If Abbie gets grumpy she becomes crabby Abbie," and just little comments like that – they're fine. But then someone said, "Scabby Abbie," the one time and that really, really brought me down cos that’s what people used to say when I was younger, and I just couldn’t, no that really upset me.
How did you deal with that situation?
I just kind of battled through the work but when I get home it's just like, 'No, I've had one of those bad days and I just can't do it.' Usually end up, went to the bar [laughs] and just sat with just even people that I knew and just had a drink just to, just need to calm down cos it's not really one of the things that I [sniffed] enjoyed.
Abbie’s dermatologist talked to her about triggers like stress and suggested some foods to cut out.
Abbie’s dermatologist talked to her about triggers like stress and suggested some foods to cut out.
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And see, but I haven’t seen any effect that these, what I'm eating every now and then, it's flaring up my skin so I'm just every now and then I eat it in smaller doses just in case.
Abbie talks about how she manages her itchy skin at night so that she can sleep better.
Abbie talks about how she manages her itchy skin at night so that she can sleep better.
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Abbie’s dad has psoriasis but she thinks that because is older and married their experiences with it are quite different.
Abbie’s dad has psoriasis but she thinks that because is older and married their experiences with it are quite different.
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So, trying to persuade him to just try and make a difference.
So you tend to be sort of the source of education and encouragement for him?
Yeah
Does it ever work the other way round where he sort of gives you information or advice and?
No, my dad's quite quiet and cos he's had it for so long and he just doesn’t go to the doctors about it. He got given this one cream many, many years ago and he'll just keep getting the repeat prescription and using this cream now, and he just kind of -, he just, he just goes with it.
Abbie talked to her partner about her psoriasis when she started phototherapy.
Abbie talked to her partner about her psoriasis when she started phototherapy.
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And just kind of left it.
Abbie worries about other people noticing her psoriasis.
Abbie worries about other people noticing her psoriasis.
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And I'm always one of those that I'd always wear nice clothes so that people didn’t feel -, I'd look nice and it kind of just draws it away a little bit, and it'll draw my attention away from it especially if I'm going out to new places, meeting new people.