Zara

Age at interview: 16

Age at diagnosis: 2

Brief Outline:

Zara was diagnosed with psoriasis at 2. The psoriasis affects her feet only and has been severe, affecting her ability to walk and do sport. Zara has tried lots of different treatments over the years, from creams and ointments to oral immunosuppressant drugs and light treatment.

Background:

Zara is 16 and at sixth form. She lives with her mum. Her ethnicity is White British.

More about me...

Zara was diagnosed with psoriasis when she was 2 years old. She does not remember anything of this time but has been told by her parents that initially she had to spend a lot of time in hospital. When Zara was little, the psoriasis didn’t affect her as badly but over time the condition has gotten worse. Zara’s psoriasis affects only her feet. Zara’s feet can get very itchy but also sore and painful, and excrete puss and bleed. She has lost all her toenails. This affects her walking and mobility and Zara has needed crutches. 

Zara has tried lots of different treatments over the years; steroid creams and ointments, oral immunosuppressant drugs  and she’s also had light treatment. Zara had to stop the light treatment early because she developed a rash from it but says it still helped her. She’s also needed lots of antibiotics as her skin gets easily infected. Zara has noticed that stress is a major trigger for her psoriasis and when she was diagnosed with epilepsy at 14, the stress of it made the psoriasis worse. 

Psoriasis has had a big impact on Zara’s life. She says she feels self-conscious of her feet and awkward if people stare at her feet at the swimming pool or when she’s been on the beach on holiday. Zara tends to cover up her feet and she can only wear certain type of comfortable shoes. She’s unable to wear tights, flip-flops or heels. Zara wears seamless silk socks designed for psoriasis which she finds really comfortable. Having psoriasis has had a big effect on schooling. Zara has missed out on a lot of school and she was bullied when she was younger. Studying for A-level exams has been really difficult because the appointments and being unwell have taken up so much time. Falling behind can increase stress levels which can trigger the psoriasis to get worse. Sport has always been Zara’s strongest subject but she hasn’t been able to as much PE as she would have wanted to, nor gotten appropriate support. She has found some sports easier than others, for example badminton and cricket because they don’t involve kicking (she can rest her feet a little). She has recently taken up county badminton.

Zara says that over time she’s learnt to live with psoriasis. She has had counselling but didn’t find it too helpful because, instead of psoriasis, they focussed on other things. Zara’s friends are fine about the condition and have always known about it as they have grown up together. She has never met another young person with psoriasis.

The itchiness of psoriasis on her feet distracts Zara at school.

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. 

Zara was diagnosed with psoriasis on her feet when she was two years old. She didn’t understand much about the condition at first but felt it made her “different”.

I didn’t know what it was, it was I didn’t really understand what psoriasis was it was just something that I had that other people didn’t. I didn’t mind it to be honest I just, it felt kind of cool when you, when I went into primary school cos I stood out and eventually it got worse just cos I used to get bullied for it but yeh I just, the bullying didn’t bother me to be honest and the school sorted it out.

What do you mean about the initial was sort of a bit cool to stand out, do you remember how you felt about that at the time?

Yeh it was just cos I was different, I mean there were so many young children around here everyone, everybody was the same and cos a lot of like my friends had, we’d all been born at the same time.

Yeh.

And they were all, whenever they got together they were all talking about their children but mum always came back and said how many times I came up in conversation just because of my feet and how I was different, how I stood out but I quite liked being seen as special and a bit different to be honest.

So it’s good different.

Yeh.

Zara enjoys playing sports but sometimes blisters and oozing from the psoriasis on her feet stop her from playing them.

So like in Year 7 when I first started secondary school I joined all the sports clubs.

Okay.

And I used to love them. I used to regret it afterwards because it was so painful.

Right.

And in year 8 I decided not to do that just so to give my feet some relief but yeh like county badminton was difficult because I was constantly on my feet and I was constantly moving and it was, it was a lot of pressure on my feet and we went on a badminton tour for, four weeks and playing badminton every day my feet were so bad and, but they get to a point where they can’t get any worse and they almost start getting better it’s just a change and they might be more red but they don’t have as much dry or pussy skin on them and you’ve just got to get past that stage, yeh.

And do you sort of know these different stages of your skin how it goes up and down and?

Yeh you recognise a pattern.

Zara was young when she developed psoriasis and didn’t understand why she had it. At first, she blamed her grandfather.

I just didn’t understand why it was me that had the psoriasis and what I’d done wrong. So yeh that used to make me quite angry and upset, but yeh now I just kind of carry on with.

Did you used to have that sort of blame like what have I done wrong?

Yeh I’d just, I couldn’t understand it. My grandpy has psoriasis.

Right.

So he has it on his body.

Oh okay.

And I, when I was younger I used to blame him and I mean when I grew up I realised it wasn’t his fault.

It was just something that happened, but yeh I was, it was annoying because I didn’t realise, I didn’t understand why it was me that had it and whey couldn’t somebody else have had it and because nobody really understood. I felt like I was alone and nobody understood what I was going through.

Zara had an allergy test when she was little, but the only outcome was finding out she’s allergic to cheap metal (often used in costume jewellery).

I remember them doing allergy tests on me but that is about it.

I think it was allergy testing, you know, somebody wrote on my back in a purple pen and put stickers on me.

Did anything, did they find anything?

No, oh well they found out I’m allergic to cheap metal.

How did you find the allergy testing?

If you remember. Well I didn’t mind it, I was probably about seven when I first had it done maybe eight I don’t know. I couldn’t shower for a week but that really didn’t bother me cos I don’t really like showering. And all my friends thought it was quite cool with the stickers and the writing on my back. Besides that.

Was it uncomfortable or was it painful or itchy do you remember?

It was quite uncomfortable so that movement was a bit difficult. When I had to take them off that was painful but besides that it was okay.

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

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. 

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.

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. 

Zara felt fed up having to spend time in hospitals and seeing different doctors without her psoriasis improving.

When I was younger I, well I suppose when I was younger and older it felt kind of awkward - I suppose that I didn’t, when I was younger I didn’t totally understand why they were taking photos and why there were so many people, but I hadn’t had a great experience of hospitals so. When I was older I went to we used to get called in for like there used to be a regional or whatever and people come from all different hospitals and then they’d just people there would take photos and ask some questions that was, that was quite stressful and it was also quite annoying because I used to waste a lot of time at hospitals and in the back of my mind I always knew that whatever they came up with wasn’t going to change anything. But yeh.

Why do you think you thought that it wouldn’t change anything?

Cos you know when I started going to these, you know, I’d been there, I went to them about 12 to 14 years old and nothing had changed yet and I didn’t see why a doctor from Newcastle was going to come up from any, come up with anything different from the doctor from Oxford so. 

Zara’s unsure if cyclosporine made her feel tired or if this is from her epilepsy medicine. Her doctors checked to make sure her psoriasis and epilepsy medicines wouldn’t interact.

I was 14 when I was diagnosed with epilepsy.

Okay.

So I couldn’t really tell if it was the fact I was having regular seizures or the cyclosporine that was making me tired. And then when they gave me medication for the epilepsy I did feel an increase in tiredness I use to come home and have a nap in the afternoon, but I do believe that was the epilepsy medication rather than the cyclosporine.

Okay and do you know why you had that feeling, how could you tell?

Because within the first three months of well the first few weeks of being diagnosed with trying cyclosporine I didn’t feel a 

Zara enjoys sports but is limited by having psoriasis on her feet.

If I was given the opportunity I’d like to be, play badminton for England or something but I kind of gave up on that because I would have to spend all day, I don’t know, six hours on my feet training and I just wouldn’t be able to do it just, it just I’m not sure they’d cope. I mean just doing a day of sort can put so much pressure on them like do a cricket tournament or something and the next day they’d barely be able to walk so.

And were there other forms of sport that you found easier to do or enjoyable?

I always struggled with football because I didn’t have any nails so kicking the ball when taking a shot or something I found, it found it quite difficult and very painful so eventually I did give that up. cricket is easier I think than badminton because its, you get a rest period so if you’re fielding the ball isn’t always at you and you're bowling I mean if a bowl is speed a fast bowl then it’s more difficult but a spin ball’s not too bad because I’m not putting so much pressure on my feet. Yeh it was just that, that rest period made it easier although I can’t, I do struggle to stand still for a long period of time.

Right.

Just my feet ache and then I start, I kind of start walking about and they still ache and I just get fidgety and get itchy and, you know something’s happening and they’re getting bad and you can’t do anything about it.