Evie

Age at interview: 20

Brief Outline:

(Text only clips) Evie has had eczema since she was 6 months old. She also developed acne when she was 15, but grew out of it as she got older. Evie finds that others often do not fully understand the effect of eczema on everyday life.

Background:

Evie, aged 20, is a university student. She also works as a part-time customer assistant. Her ethnicity is White British.

More about me...

Evie has had eczema since she was six months old. Her eczema is mostly on her hands and feet (also known as “socks and gloves”) with some patches on her legs and arms. She finds the eczema on her hands particularly difficult to treat because they are exposed to many drying factors throughout the day. Evie’s triggers include tree nuts, cats/dogs, dust mites, stress, and changes in temperature (e.g. summer heat or air-conditioning). Evie also had acne between the ages of 15 and 17. Acne runs in her family and she initially waited 6 months before seeing a GP. She took antibiotic tablets for a year but found they did not help much. With regular exercise and a healthier diet, Evie’s acne eventually cleared up.

With regards to treatment for Evie’s eczema, she initially consulted GPs before receiving her first dermatology referral at the age of 6. She finds it positive that there are often medical students also present at her current dermatology clinic, as this gives her an opportunity to inform them about the experiences of living with eczema. Her current treatment routine consists of using several moisturising creams, steroids and antihistamine tablets. The only side effect that she has experienced is skin thinning with steroid use. Evie is considering UV light therapy as a potential treatment for her eczema in the future. She also notes that paying for prescriptions is an expensive investment.

Evie keeps herself busy with her studies, a part-time job and various hobbies in order to distract herself from the itchiness of her skin and avoid the temptation to scratch. To prevent scratching in her sleep, she protects her hands with tubular bandages. She follows eczema-related Facebook groups and Twitter accounts, often giving advice based on her own experiences, including to mothers of young children with eczema. Evie uses her university library access to research in medical journals about eczema. Evie experienced a flare-up while at university and suggests that it might be linked to a ‘seven year cycle’ theory (the idea that the status of eczema changes every seven years). She thinks though that this flare-up was probably due to a change in environment and increase in stress. 

Evie’s advice to young people with eczema is to look up treatments online and keep a photo diary as evidence of what happens in between appointments with doctors. Evie also finds that the eczema-related Facebook groups and Twitter accounts are a good place for information and support. Evie’s advice to healthcare professionals treating young people with eczema is to recognise and address the effects that eczema has on everyday life.

Evie chose to see a dermatology specialist about her eczema at a hospital which teaches a lot of medical students.

So did you say that because it's medical students that are sometimes training in the dermatology unit, that you feel that you're passing on your experience so they can learn from it?

Yeah definitely 

Could you say a bit more about that cos that’s really interesting, really important, really interesting.

Yeah, well this is actually most of the reason I did this because I feel like there's not enough out there without actively looking for it.

OK 

And so you look at…they’ve got this little handbook of all like these different eczema conditions, and you look for yours, it looks nothing like yours. So you feel like you should like help educate them because if they haven’t got it themselves they…I would assume, well they wouldn’t know how to treat it, but it's a different situation to what they know.

They're just seeing it as all means to an end where we see it as a lifestyle.

Evie chooses to see a dermatologist at a hospital that trains medical students and it was here that she heard about some research into genetics and eczema.

Yeah, well last year I got admitted to a, a different dermatology when I was re-admitted from the GP. And they told me something interesting about a filaggrin gene, which is the , the gene that is, I think you’ve got two copies, and if one or both of them is mutated your body can't control its moisture levels in its skin, and through the university I just went and looked at medical journals and it was actually really interesting.

But I haven’t been formally tested for it but I think it's quite obvious that I probably do.

But yeah a-, that was really fascinating cos there isn't really a lot of research into eczema.

Which I was…cos when I was trying to find, they had like a scientific cause, no-one really knows yeah.

Evie uses ‘photo diaries’ to record how her eczema changes. She shows these to her dermatologist to help them understand her situation.

Could you say a bit more about photo diaries and what those are?

Yeah. Well basically I did it a lot round the time of my exams, so kind of every couple of days or when it was really awful, and especially when you get out the shower as well and you can see like the borders of your eczema where it's gone red. Take a picture, sort of make…k-keep a note…keep a note of like the date and time you took it on your notes, and then you can tell the doctor like, "Ooh this is what it looked like at this cold snap, for example like in the winter, and this one looks like now and now it's warming up," so they can see actively that, yes you really do want like to fix this, and they can see exactly how bad it was and the seriousness of the situation, not cos you’ve got it on a good day and it's quite healed up cos they could just discharge you then and there and you…you'd be none the wiser.

Yeah. And how do your doctors respond when you’ve sort of shown them the photo diaries you’ve kept?

They're quite impressed actually. Like, I don’t know if they don’t see it very often or if they, they see I'm clearly quite keen to find an end to this, and they, they are quite appreciative cos they flick through and they see, OK well that’s…especially when they're showing the medical students as well –  you're helping educate them at the same time.

Evie told her GP that her eczema seems to get better when she goes on holiday to sunny climates. She researched online to find out more about the phototherapy.

That was what I was talking to my GP about when I was trying to get referred. So, when I did get referred I actually got referred to the top doctor in the hospital for light therapy, which was very…really lucky. It was more that I was noticing when I was going away on holiday it would clear up entirely, and then it would come back and it would be gone away for two/three weeks and then it would come back.

So then I was telling my GP and they're like, "OK, maybe you want to consider light therapy." So then I did some research and looked and obviously certain rays are taken out, and, and obviously I wouldn’t …I don’t think I'd ever go to a sunbed just because of the skin cancer; I'd want to get it done professionally but then I figure if they're not gonna give it to me I might have to try.

It's all about doing your own research really and asking around, getting other people's opinions. There was a person on the support group, people using sunbeds for eczema. Some people say it worked, some people say it didn’t. 

Evie likes to “help out” in some online support groups, including one for parents of children with eczema.

Yeah, well it's more just a kind of as and when basis, someone will write on there and you can put your input in. So mums that are really like flapping like, 'Oh I'm not doing enough for my child,' or…and you kind of give them ideas, share ideas and people ask…especially, what happens most is asking like always is steroid OK, did anyone have any problems? 

Cos obviously they're dealing with four/five year old children.

And I've grown…I'm quite lucky that I've grown up with it and I've been through all of it and I can tell people my exact experience.

And do you find that people tend to sort of respond to you and it tends to become a conversation about that or?

Yeah it does cos then they go, 'Ooh that didn’t work; what else did you have?' and then you can kind of talk to them and they can talk to their GP. So, yeah it’s good…it's to have, to have like a mutual kind of condition you can talk about and it makes it normal.