Four of the young people we talked to had tried phototherapy (another name for artificial sunlight, or ultra-violet light, therapy). Evie was on a waiting list for the treatment. A few other people had heard of the treatment, such as Aman and Himesh who had been told about it by their dermatologists. Although sometimes confused with being phototherapy, red-light therapy is different and considered by some as an alternative and complementary therapy.
Everyone who had tried phototherapy was referred by their doctors. Usually the treatment took place at a hospital, although Vicky’s took place at a local community GP clinic. Shams found it a strange experience going to the hospital for phototherapy, especially the first time. He said it got easier once he knew the routine and where to go for appointments.
Georgia describes what it’s like having phototherapy at her hospital.
Georgia describes what it’s like having phototherapy at her hospital.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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It’s pretty much like going on a sunbed really. I will go in and I will stand in there fully naked. And there’s, you need to keep your eyes closed if you’re not using like a visor or like goggles. Cos I think it has quite a bad impact on, on your eyes or your retinas. I’m not too sure. And it increases bit by bit. It’s a programme of about 24 weeks I think. So it’s quite long. And it’s literally from, the first session is about 20 seconds and it will go up in a matter, it will go up by 4 seconds a piece. So you will be in there for longer and the dose will be higher. And it’s, she, my, I think my, it’s supposed to turn around within about two months. It’s to start showing the like effects of your skin healing. But I think that’s, she, why she was worried. Because it didn’t, it wasn’t showing much of an effect of healing in certain parts of my body.
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.
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.
Age at interview: 20
Sex: Female
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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.
Phototherapy was seen as the ‘next step’ or ‘last resort’ after trying to get control of eczema with emollients and steroids. Georgia saw it as a more ‘natural’ alternative to using steroid creams and some used the treatments in combination. Not all doctors thought it was a good treatment for eczema though. Some said their doctors didn’t seem to know of phototherapy as a possible treatment for eczema. Cat’s first dermatologist recommended phototherapy which she had for a few months. When Cat moved to a new city for work, she saw another dermatologist who wanted her to try immunosuppressant treatment instead. Others, like Shams, didn’t notice much difference to their eczema whilst using phototherapy.
A few people noticed that being in the sun helped their eczema and thought phototherapy would be helpful for them. Some people said at first they thought phototherapy would give them “a nice tan”. In reality, it was more like a bit of sunburn for a couple of days after each session. Cat found this was noticeable (especially in winter) and was awkward to explain. Some people were concerned about long-term damage from skin cancer risks. Georgia found her skin was dry and sore for a while after each treatment. Her doctors worried that her skin wasn’t healing properly. Goggles should be worn to protect the eyes.
One concern for Vicky was how the phototherapy equipment made her feel claustrophobic (fearful of being in small spaces).
One concern for Vicky was how the phototherapy equipment made her feel claustrophobic (fearful of being in small spaces).
Age at interview: 19
Sex: Female
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I remember thinking when I did it, I was like ‘oh I’m gonna get a nice tan, it’s gonna be lovely tan’ and then it was sort of a couple of sessions and I was like ‘arr yeah, it’s not that type, is it’. Cos you know the general sunbeds you lie down in them, don’t you, whereas this one you had to stand up and you didn’t have to wear goggles or anything cos it wasn’t the like extreme light from it – it was, yeah I think it was, I remember it being, it was really warm and it got quite claustrophobic. It was just like, it is like a box that’s like a sunbed but it’s upright and you have to hold onto a bar that’s on the top and you stand there for about, we did it in 10 minutes sessions but you can do it for like longer if you want to. I didn’t like it for after 10 minutes cos I’d get like too hot and too claustrophobic.
Himesh was offered light treatment but decided not to try it.
Himesh was offered light treatment but decided not to try it.
Age at interview: 17
Sex: Male
Age at diagnosis: 10
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I was offered it and I think I said not to do it because I think like my dad had the laser treatment as well, well similar kind of laser treatment and it didn’t help him at all it made it worse. But yeh I didn’t want to do it as I think as well it took a lot of time off school to do the treatment so yeh I decided not to do it and just manage the skin how I was doing basically, so yeh.
And was that through your dermatologist?
Yeh, definitely yeh through the dermatologist always suggesting me things to try out so yeh.
And were they sort of quite happy with your decision not to go for the sort of light therapy?
Yeh definitely yeh, they don’t mind they just basically offer you like new treatments or new ways of going about with your eczema and then you can decide to either take it on or not basically, so yeh. So that’s what I like about it to be honest, you always get like suggestions and trying out new stuff to try and make your skin better I guess so yeh.
A practical issue is fitting phototherapy sessions around school and work. People had treatment two or three times a week and some did this for several months. Georgia worked part-time when she had phototherapy. Her appointments were made to fit around her work hours which meant she didn’t have to take any time off. Some people said that appointments at the hospital often don’t run on time and even though the actual treatment only took seconds, the trip to the hospital and wait could be time-consuming. Shams stopped phototherapy after a few months because he didn’t find it made much difference to his eczema and getting to the hospital was very inconvenient.
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