Devan

Age at interview: 18

Age at diagnosis: 13

Brief Outline:

Devan developed acne at the age of 10/11. He tried GP-prescribed creams and tablets before being referred to a dermatologist for Roaccutane (isotretinoin). The bullying he experienced about his acne during school motivates him to help other young people.

Background:

Devan is 18 years old and a college student. He is single and lives with his parents. His ethnicity is White British.

More about me...

Devan developed acne in primary school when he was 10/11 years old. His peers did not understand his skin condition or that it was not his fault. The other children called him names and the bullying worsened throughout secondary school as his acne became more severe. One particularly upsetting trigger for bullying was when a school teacher called him “spotty” in front of the other pupils. Devan became very withdrawn and found it difficult to trust other people, especially teachers. He tended to spend breaks and lunch times in an empty classroom because it was difficult to make new friends and trust those he already had. Devan thinks that bullying, including that about acne, is an extra “barrier” for young people who are already facing a lot of changes at that time in their lives. 

Devan tried lots of shop-bought products for his acne when it first developed but found that some of these actually made his skin worse. At age 13, he visited his GP who prescribed different treatments, including various creams and antibiotic tablets. Devan’s acne affects his face and back; he can’t easily reach the acne on his back to apply topical treatments and thinks this is might be why it has taken longer to clear than the skin on his face. He also found that one of the creams that his GP prescribed bleaches clothes and towels, meaning that it was especially off-putting to use on his back. Devan was keen to try all of the options that his GP could offer and he was reluctant initially about seeing a dermatologist. He had read a lot about isotretinoin online and was worried about possible side effects, such as feeling suicidal. When the options that his GP could prescribe were exhausted, Devan and his doctor talked about a dermatology referral. The GP was able to give him more information about isotretinoin and Devan found this very reassuring. 

Devan visited a dermatologist when he was aged 16. He found that the first dermatologist he saw was not very “young person friendly” and expected Devan to know all of his medical history off the top of his head. Devan wanted to transfer to another hospital’s dermatology unit but this would have meant re-joining a waiting list, so he decided to stay. Devan was pleased when his next appointment was with a different dermatologist who he has seen for most of the visits since. He started on Roaccutane (isotretinoin) and has since been back many times for checks-ups. His dermatologist was concerned about his blood test results and also about why the acne was still there after many months of treatment. Devan was then prescribed prednisolone to reduce inflammation of the acne as well as being given a medicated face wash and HiBiScrub. Devan experienced some side effects from taking Roaccutane, such as: dry skin on his ears and nostrils; cracked lips; headaches; bleeding gums; and increased sweating. However, with help from his doctors about strategies to minimise these effects, he finds that they are manageable and says that he prefers them in the short-term over having acne.

Things have greatly improved for Devan around his acne since leaving school. He has not experienced any rude comments since starting college and, shortly after taking part in the interview, he was discharged from the dermatology unit. It was a relief that his skin had greatly improved after years of frustration with so many treatments not working. He is pleased that he doesn’t have to travel to and from the hospital so frequently anymore because this was quite expensive. Devan’s doctors found that his cholesterol levels have increased since taking isotretinoin and they have asked him to return for another blood test in a few months. Devan used his difficult personal experiences of school to produce several support websites with the support of Fixers (an organisation that helps young people, motivated by personal experience, to make positive change for themselves and those around them), including one to educate teachers about the ways that their comments and actions can lead to bullying. He works hard in a number of volunteering roles to raise awareness and offer support to other young people affected by bullying. 

Devan was cautious about searching online about isotretinoin because of “bad press”. He also found that some kinds of resources weren’t fit for purpose; for example, he feels that the acne sections on the NHS Choices website are too generic and not tailored enough to young people. Devan found that a lot of information on the Internet for teenagers is US-based and feels that it would be helpful to have more information about, for example, available treatments/brands and healthcare services in the UK.

Devan didn’t want his peers to see his back acne when changing clothes for PE.

Could you tell me a bit about what you first noticed and where you first noticed acne coming up?

It was, I sort of first noticed it on my face itself. And that was one of more places, one of the places which was sort of the worst. It was predominantly my face through secondary school… as well purely because people didn’t see my other, you know, my back, they didn’t see my back. Or they’d only see that if it was during P.E. and you’d have to get changed so they’d only see it then. But I’d sort of found different ways to come around that, to stop people from noticing by, say, wearing my P.E., P.E. clothes underneath my school uniform and different things like that. To just sort of save that hassle …

Yeah.

… of having to deal with people like that.

Devan didn’t find his first dermatologist ‘young person friendly’.

I’ve seen three different dermatologists. The first person I didn’t like them. He was quite, he wasn’t let’s say ‘young person friendly’, he was quite, he expected me to know everything about my medication that I’d had with my doctor, when you’d have thought he’d of had that information from the doctors already. And the one, the one that sort of put, spotted that, the dermatologist that spotted that my acne should have started to improve sort of spoke to me about that, she was sort of with me for a few of the appointments but now she’s left and I’m now being treated by another, the sort of, I think she’s one of the higher up dermatologists that’s there anyway.

And again, the doctors, it’s just a case of spotting somebody who’s available, really.

With the first dermatologist that you didn’t really like, his sort of, his tact and everything how did you go about getting a different person?

I just sort of rang them up and told them that I didn’t like him. And I wanted to sort of move to the other hospital but apparently if I’d have done that I’d have had to wait even longer to get the medication because I’d have been put back to the bottom of the waiting list. So they just sort of said grin and bear it. But thankfully, somehow he doesn’t see me anymore, it’s somebody else that speaks to me instead.

Devan has tried a mix of treatments at once, including a topical treatment alongside a prescribed antibacterial face wash.

Well, I were just sort of trying whatever they had available because I just wanted to get rid of it really.

So they, doctors prescribed, they started me off on, I think it was just the creams. Then we moved to just medications and different variations of medications. And then they decided to put the cream and the medication together. And as a very last resort they decided to use the HiBiScrub, which has a bit, bit of an impact. I think it might have been because of the alcohol content that it’s got in it.

And we were, I was using them with a mixture of off-the-shelf products as well at the same time.

Could you tell me a bit about the HiBiScrub?

Yeah it was just sort of the hand wash version that you, or the, the one that you could use for the skin and it was really, really sort of easy to use, you just put it on with cotton wool pad and put it round everywhere that had the acne and it just sort of worked, it sort of cleared it up so it wasn’t visible on my face but obviously you couldn’t, I couldn’t reach to put it on my back.

Devan didn’t like the sounds of isotretinoin when he first heard about it. His GP helped him make a decision about trying it.

So it had been quite a few years of trying different treatments, so the GP, up until then …

Yeah. Quite a lot of different treatments, yeah.

Yeah. And you said you felt frustrated?

Yeah, that’s was when I, when I sort of left secondary school, well it was sort of part way through secondary school that I sort of really got frustrated about there’s nothing working. But then once I left secondary school I had a bit more confidence to be able to just say, “Right, I need to do something now”.

Hmhm. Hm. Hm. Do you remember when the dermatologist was first mentioned as an option by the GP?

I, yeah, and I just said, “There’s no chance”. And, I mean, to be fair, at the minute it sort of, I didn’t, I sort of wouldn’t have done it differently purely because I’d still wouldn’t have been confident going to see them.

Yeah.

But what, after the GP sort of explained it to me that it’s not all bad  and, you know, there’s really nothing to lose doing it  I sort of come round to the idea of actually going to see them.

But when I was a lot younger, I wouldn’t have, there was no chance that I wanted to speak to them.

Hm. Hm. Could you say a bit more about why it was that you sort of at first really didn’t want to?

It was purely just because the bad press and everything like that. They, what the, it just sort of seemed like more side effects than positives. But now I’ve sort of been on the treatment, and I’m still on it, I’ve sort of noticed that the side effects, yeah they are there but you can manage them and I’d rather have these side effects than have the acne. 

Devan needed to have several blood tests when he started on isotretinoin as the results were unclear. It was also diagnosed that he had asthma.

And you mentioned about blood tests when, when you first went, and then when you’ve been subsequently. Could you tell me a bit more about those?

Yeah, they were more sort of last, when I first sort of started it every, [sigh], at one point every week I was in the doctor’s getting my bloods done cos they weren’t right. And then, once they’d sort of settled out, they wanted to just do random check-ups. But now, at this sort of, this sort of two month period that I’ve had with the isotretinoin, they haven’t actually taken any bloods. So they’ve, I think they must be happy with the way it’s showing.

I do have asthma and I’m on the brown inhaler, but that, I don’t, I wouldn’t have said that it interacts but apparently the brown inhaler, with it being a steroid, might have some sort of effects. So, I think that was one of the reasons why they wanted to sort of check me over because they only found that, they found that I had asthma while I was starting the treatment for isotretinoin.

Oh right.

So they sort of found it at the same time.

And was that when they were doing sort of examinations for …

It was actually the GP that sort of noticed, and they wanted, the, I, they, I went to see the GP about difficulty sort of breathing, it was sort of like wheeziness that I had and then I booked myself an appointment with the asthma nurse and she sort of did the different tests that she has and then they found out that it was asthma that I’ve got. 

Devan’s been on isotretinoin for longer than usual because his acne didn’t respond as expected.

The nice doctor that I had sort of most of the appointments I sort of, we, she sort of sat down and calculated how, how long I’d been on the isotretinoin and I think it worked out 16 to 18 months when they normally only prescribe it like in like 12 month blocks, two months’ at a time.

How did, how did you sort of feel about that contrast between the length of time that you’ve, you’ve had the treatment …

I just sort of expected it really because, I mean, I’m always, I’m never it’s like I’m a medical nightmare more or less, so … [laughs]

OK [laughs]

… anything that’s going to go wrong, it usually does [laughs] … in that sort of side of things.

Yeah. Does it worry you at all in terms of other side effects, or is it ….

Well, I’m on the highest dose possible so I’m getting the highest amount of side effects possible as well, so it’s sort, they sort of balance each other out.

A side effect of isotretinoin for Devan is sweating more. His dermatologist made suggestions to stop others noticing.

See, recently with the isotretinoin I’ve noticed that I’ve been, my temperature, well, my temperature’s normal but I feel a lot warmer and I start sweating a lot more as well. So that’s one of the things that the doctor was looking at. Of, by, looking at how I can sort of control the sweating, because otherwise, that is one thing that people notice, is the, that they see you sweating and you sort of start thinking, “Oh, people are going to see it”, and it makes you sweat more or something.

So, obviously that, that’s one of the biggest side effects. Another side effect was, it was like headaches and toothache as well. I had a lot of bleeding gums, my gums were bleeding quite a bit while I were on the steroids for the isotretinoin and, again, that was another side effect, so I’ve sort of had quite a few of the side effects that are listed that you’re expected to get as well. 

Well, when, it was sort of recently with the sweating that the doc-, the GP, she sort of says to me, it might be worth wearing tee-shirts with, or hoodies, that have got a hood on that you can sort of hide that sweating with. And so that it just sort of, say if you were sort of sweating on your forehead – you could just sort of use the arm and wipe the sweat off like that, so that nobody would sort of notice it that much. And, but with sort of, when I were in secondary school it was sort of my school uniform was a black hoodie, a black tee-shirt anyway, so you could sort of easily keep that on rather than take it off.

Devan had acne on his back and describes how it would bleed and he would have to find ways to clean his bed sheets and t-shirt.

When I sort of started with acne – a lot of them would pop so I’d have, say, tee-shirts that were covered in blood from them. But other than, I don’t really get that much now.

I did obviously have a point where say my bedding, I’d find spots of blood all over that, or they’d be bleached because of the creams but, like I say, now more or less, it’s more or less clear. 

Yeah. Yeah. What, what, what was the sort of impact of if there was blood on clothing or, or bedding?

A lot of it, it depended on how it was, was washed. The, I mean, the bleached clothing I just had to get rid of it because it wouldn’t’ come out. But the blood did just seem to wash out, did the blood.

Is it something that bothered you at all, if you did see the blood?

Yeah, purely because sometime, say if it happened the morning, and I wasn’t at home, I was at school, some people might have noticed it. Thankfully I had a black jumper so I’d just wear that all day. And, so if I’d had known people would sort of spot, say, “Oh, you’ve got blood on you back”. So it was that sort of thing, people would notice that. 

People didn’t see my other, you know, my back, they didn’t see my back Or they’d only see that if it was during P.E. and you’d have to get changed so they’d only see it then. But I’d sort of found different ways to come around that, to stop people from noticing by, say, wearing my P.E., P.E. clothes underneath my school uniform and different things like that. To just sort of save that hassle …

Yeah.

… of having to deal with people like that.

Devan remembers verbal bullying at school and a teacher pointing out his acne to other pupils. He has since set up a website to inform teachers and parents about bullying.

Yeah basically the teacher just says that I was spotty. And so obviously that was in Year 9 and it wasn’t, it was just like ‘uhhh’. And the teacher started coming out with words like that, that’s one of the main reasons why I’ve worked with Fixers to sort of educate teachers about bullying because what the teacher didn’t see was that I actually got the bullying because of him saying that comment. And it was actually the same teacher that told the group about another operation that I’d had that had caused further bullying for me as well. So it wasn’t just the acne…

Right.

..that was a problem. 

Yeah. Could I ask you about the bullying, if you don’t mind?

Yeah well it were just sort of people would say, “Oh, you freak, you’re spotty”, and different, different sort of evil words that you could come out with. There were also talk, calling me fat, ugly, different things like that as well. But a lot of the bullying was around the acne and the other operation that I’d had that which I’m not gonna sort of go into. 

I basically created a website for teachers just to provide them with advice about bullying and it also sort of gives them a few case studies of young people And I’ve also created a few other websites as well. One for young people themselves so they can go on there, if they’re being bullied, and find out who they can talk to, where they can talk to somebody, and different things like that. And I’m currently working on creating a website for parents as well.

Oh, wow.

So that parents can sort of have a bit of advice about it, bullying. How to sort of spot it, because young people are pretty good at hiding it away. 

For Devan the biggest cost of having acne has been getting into the city to see his doctors.

It’s purely just for me getting into [city name] where, where the GP, where the dermatology is.

That’s purely, the, one of the biggest sort of financial costs that I’m faced with. But thankfully I’ve found the [home to hospital transport service], it’s only £10 to get there, so it’s not too bad, but, as it would be to take the normal bus.

But that is really the biggest cost, because thankfully I don’t’ have to pay for my prescriptions yet.