Rosie

Age at interview: 18

Age at diagnosis: 12

Brief Outline: Rosie has alopecia universalis. She had rapid hair loss from her scalp in her first year at secondary school. This was quickly followed by the loss of other body hair. She has tried steroid treatments but found that topical immunotherapy treatment with DPCP (diphenylcyclopropenone) is most effective.

Background: Rosie is 18 years old and has just started at university. She lives in a shared flat with other students. Her ethnicity is White British.

More about me...

Rosie started losing her hair at the age of 12. Initially she noticed one small patch on the back of her head and then within a month she had lost all the hair on her head. Her other body hair quickly followed. By mapping out her periods of hair loss, Rosie has learnt that her specific trigger is exam stress. Her hair growth is slow at the moment as she has recently finished her A-levels. She has just started at university and expects that she will continue to have hair loss whilst she is studying.

Rosie has had a largely positive experience with doctors and dermatologists, finding them to be “open and friendly”. Rosie went straight to her GP and was referred to a dermatologist about her rapid hair loss. She felt nervous about the first appointment but found it helpful because the dermatologist let her talk it through. She had various tests done to check that the alopecia wasn’t being caused by other health conditions. Rosie has tried a number of treatments such as steroid tablets, steroid drips and topical immunotherapy treatment with DPCP (diphenylcyclopropenone). The topical immunotherapy treatment involved her going back to her dermatologist every 10 days for the DPCP to be painted onto her scalp. The treatment worked quite well, although it did give her a raised rash for a few days which could be itchy and annoying. She stopped the topical immunotherapy treatment during her A-levels as she knew that the exam stress would undo the hair growth. 

When Rosie was first diagnosed, she was concerned that people at school would make judgements about her. There was a rumour going round that she had cancer but things soon settled down. Rosie used to wear bandanas at school but has decided to try wigs more recently. She says that university is a big change and that she wanted to wear a wig to be able to “walk into lectures confidently”. Rosie currently has two NHS wigs of different styles which are made of synthetic hair. Occasionally she finds them to be hot and uncomfortable and they can be at risk of falling off, particularly when doing sports. She is looking into purchasing a real hair wig but knows that this will be expensive. Rosie has also started stenciling on her eyebrows in the last six months and she has learnt make-up techniques to give the impression of eyelashes with eyeliner.

Rosie blogs about her experiences online and this has received a lot of views from all over the world. Her advice to other young people with alopecia is to try not to worry about it and to know that there are ways to help confidence, such as with wigs. She encourages doctors to be sensitive when talking to people newly diagnosed with alopecia, as she thinks many people would not be as OK about it as she has been.

Rosie has alopecia universalis (hair loss on their whole scalp and body) and can have two free NHS wigs each year.

And you said about being entitled to wigs. Could you tell me a bit more about that?

Yeah and so my alopecia comes in several strains as far as I know I can’t remember all the technical names. But there’s bits where you only lose patches of your hair, so it’s generally just having occasional patches on your scalp and then there’s like full blown alopecia, universalis I think it’s called, which is what I’ve got where it, you just lose everything. And I think because I’ve got such a severe case of it, I’m, I think I’m entitled to two wigs under a certain sort of price off the NHS per year. And I know that other people aren’t because they don’t have sort of severe enough. But I, yeah, I am [laughs].

Rosie has make-up techniques to give the impression of having eyelashes and eyebrows.

So make-up wise, I’m wearing more than I normally would today [laughs]. But normally, at the moment, cos I penc-, well I pencil in my eyebrows because obviously they haven’t grown back so they’re a major feature of my make-up and probably the bane of my make-up process mainly because they’re so difficult to match. So I’ll often find I’ll have one that’s perfect and then one that’s like a couple of inches like higher. I’m thinking ‘oh no, gotta do that again’. So, yeah, with make-up obviously no eyelashes, so I can’t use mascara, which most people wear every day to day if they’re you know, going out. But I’ve found quite a few alternatives to like having that affect. But they’re normally a lot of hassle, so I don’t bother [laughs].

Can you tell me a bit about those?

So, it’s normally just using eyeliner which gives a rough same effect. But if I just put eyeliner where everybody else would, you then have a gap where your eyelashes would normally be. So I normally use a pencil eyeliner to, well it’s called, tight-lining where you are effectively eye line on that bit. Which I nearly always poke myself in the eye doing [laughs]. Yeah, so to sort of do eye make-up it normally is, tight-lining with a pencil and then sort of a pen or gel eyeliner to just finish it off. Eyebrows is normally like a powder and a stencil which is what I currently use. Which is a lot easier than just getting a pencil out, cos I tried that and I could never get the shape right. And then to make that look better, you know, it’s using mixtures of other things like concealer and highlighters and all these ridiculous things I’m not really sure how to use [laughs] to just get it so that they look more defined and a bit more natural than just slapping on you know, powder in a stencil way. 

Sometimes things get in Rosie’s eyes because she has no eyelashes.

I don’t get sore eyes but I get a lot of stuff that goes in my eyes. Cos obviously your eyelashes, they’re sort of your defence mechanisms, they’re getting things out of your eyes and keeping things out. So when I first started wearing wigs, for example, I had a fringe and it would constantly be in my eye. And because I didn’t have any eyelashes, it was a matter of flicking it out manually and it would just stay stuck in your eye. And you just think ‘oh my God, that hurts’. But yeah and things like grit or anything, like if you’re cycling, you know, you’ve got things flying all around in the air, like if anything sort of went near my face it would normally go straight for my eyes, so I’d get grit and bugs occasionally [laughs] and all sorts of things. But I’ve sort of adjusted to that quite quickly. 

Rosie’s worked out that a key alopecia trigger for her is exam stress.

At first we had absolutely no idea what might have triggered. I had quite a few sort of bad experiences towards the end of my first year of secondary school, I had one of my relatives pass away, I had a massive falling out with one of my closest friends. And then, of course, the lot of exams that I just was not anticipating at all. So we didn’t know. It was a limbo between ‘oh, could it have been that, could it have been that.’ And then, throughout the years we mapped out, using my weekly appointments, you know, when I had hair growth and when I started losing it as well. And I had quite a few periods of sort of oh it’s, you know, it’s growing back and then suddenly ooh, losing. And when we mapped them out, when looking back, my dermatologist said, “Oh, you know, it was summer of 2009 and then it was like January 2012.” And I sort of watched it and I thought ‘well that’s when I had Year 7 exams. That’s when I had GCSE mocks. That’s when I had a couple of GCSEs. That’s when I had the rest of them; and it very quickly formed a pattern of ‘oh look, that’s an exam. Oh look, there’s another one.’ So it very quickly sort of formed of, I have a bunch of exams and then in a month immediately after was a pattern of loss. And then it would gradually work its way back to sort of halting loss and then growing again, which was quite interesting, cos obviously then we’d sort of figured ‘oh no, my specific trigger is exam stress’. 

Rosie was nervous about her first dermatology appointment.

It was quite intimidating for me, cos the only sort of bit of the hospital I’d seen before was the A&E Department, so walking around all these wards thinking, ‘Oh, I don’t really know where I’m going.’ And sort of having mum there with me also in the same boat, sort of thinking, ‘Right, I will pretend I know what I’m doing.’ Just so that we both sort of have a rough idea. But, I was quite nervous about it, thinking, ‘What are they gonna say,’ you know, are they gonna tell me that I’m gonna lose all of my hair, cos at this point, I’d only lost a little bit and was losing more and more every day, but still had enough to sort of cover the patch. And I was quite nervous about it. But, it was a really relaxed meeting. And I could just talk effectively, which I always think is good when you have sort of appointments with specialists and doctors where you just feel that you can just talk to them about it, which was definitely the impression I got. 

Rosie’s had good experiences with all the dermatology staff she’s seen.

I got on really well with all of the people that I’ve seen throughout the years with dermatologists. They’ve all been really open and friendly and I think that was partially a reaction to how I was as well, because I was so open about my alopecia and very carefree effectively. So they just were very straight and honest with me which I always found really nice. And, of course, if they had to say anything that was you know, kind of bad like, ‘Oh, we’re thinking of putting you up to the next percentage of treatment,’ they would just, they would be really nice about it and phrase it exactly how I’d sort of react to, react well to it. So they were very good at that. I can’t really think of any criticisms, which is quite nice [laughs].

Rosie compares synthetic and real hair wigs.

So I’ve only used synthetics, so far. But I’m looking at the possibility of buying a real hair, a real hair one. And just from sort of trying one on at my hairdressers. She’s got a special wig clinic effectively where she sells and buys them in. But just sort of trying on a real hair wig in comparison to a synthetic wig. It’s amazing what the difference was like. So with its, for example, with synthetic wigs they’re a lot heavier and they’re a lot hotter and, than the real hair ones and also with the real hair ones, the fibres don’t let the hairs, they don’t, they don’t tangle as easily, so they just sort of, if you swished your hair it will swish instead of with this it kind of just stays and just moves a little bit [laughs]. So it all stays sort of together. 

Rosie is starting her degree soon and expects that for the next three years she will have a “cycle of growing, exams, hair loss”.

Yeah, so obviously with university you have exams, pretty big exams at the end of every year. So, at the moment, I’m anticipating that I won’t have very much hair growth for the duration of my degree, because it will be a constant cycle of growing, exams, hair loss and then gradual growing again. And I reckon that’s what it’ll be like for the next three years. Which I’ve been thinking about really since doing my GCSEs because my dermatologist said, ‘Well, I think, I don’t think we’re going to need to do treatment, because it’s growing back, but just so that we can actually like map it out, you know, you have got five consecutive years now, two of A Levels, three of degree, where you have exams every year. So don’t get your hopes too high’ [laughs].

And how about afterwards?

Afterwards? I’m hoping really that I will just have a generic pattern of just regrowth. I’m hoping that will stop and that my alopecia will affectively disappear. But, who knows, I may decide to continue doing like a PhD or doing other exams. But I’m hoping that it only stays as an exam trigger and I’m kind of hoping it doesn’t develop to something else [laughs]. 

When a rumour went around school that Rosie had leukaemia, it hit her hard for the first few days. But it dissipated and she “got over it quite quickly”.

Our year was split into sort of two halves in the school and I know for a fact that a rumour got sent round in the other half that I had leukaemia, which hit me quite hard, because obviously I had a certain couple of friends from that half of the school that said, “I’ve heard this. I don’t think it’s true, do you want me to sort of clarify it with people” and I thought, well, ‘Half of these, the people that are spreading all this don’t know me and they don’t know what I’m going through’ or it could be worse, admittedly you know, I could have something like cancer, which is, even, you know, in every way more devastating than alopecia was for me. But it’s still was quite tough to sort of go home and say to my mum, ‘Oh, people think that I’ve got cancer.’ Which was quite weird to adjust to.

How did you deal with that situation in the end?

It very quickly sort of dissipated, as soon as the class had started to mix, because from the second year of secondary school, the class had started sort of going into sets and higher, lower. So you started mingling with people from the other half and people started actually correcting the rumours, saying, “Well, actually no, that’s wrong.” So it’s just sort of dissipated by itself. The only sort of, I was gonna say, I only really felt affected by that in the sort of first couple of days once I found out. Sort of going round seeing people in my year thinking, ‘is it you that thinks I’ve got cancer? Do you know that I’ve got alopecia?’ You know, sort of going round thinking, what’re all these people thinking of me. But after that, it just kinda vanished and I got over it quite quickly.

Rosie wore a bandana when she worked part time in a souvenir shop but she felt it was better to wear her wig when she worked in an accountant’s firm.

I have had sort of two part time jobs, sort of recently. The first one that I had was sort of at a souvenir shop and I didn’t have, I didn’t have a wig at that point. So I would wear a bandana and on the sort of really hot days I sort of would ask mum, you know, ‘Do you reckon I could get away with not wearing one?’ And we eventually decided that that probably wasn’t the best idea, mainly because I think people can feel quite intimidated if they were walk, to walk into a shop and see that the cashier is you know, teenage girl that doesn’t have any hair a lot of people would feel sort of quite anxious, I think. And again, sympathetic sort of like, ‘Oh no, this poor girl, you know, she’s got cancer. She’s working in a little shop. Well, be nice or go to the other cashier,’ so I generally wore a bandana. And then the second, the job that I’ve had most recently was part time work in an accountant’s firm. And because I’ve had a wig, I’ve worn, I’ve just worn it and they’ve had no reason to suspect otherwise, because it wasn’t in that professional environment, it wasn’t suitable to be chopping and changing between short hair, long hair, no hair, you know, it was-, really it was you decide what you’re gonna wear and you stick with it. 

Rosie’s wig used to fall off when she was cycling on her paper round so eventually she wore a bandana or nothing at all.

I had that newspaper round sort of throughout the whole time of going from wearing a bandana to wearing a wig and then consequently when doing my paper round going back to wearing a bandana. And that was mainly because when starting my paper round with a wig I would find that if it was windy or if I was going too fast, it would start to slip or I would feel it sort of giving up and I’d think ‘maybe I should slow down a bit.’ And then, also, because of the wind, it would blow around a lot and it would tangle and get quite unmanageable, so I would often just like eventually I gave up and just sort of left it at home and went out with my bandana if it was raining or without anything at all, if not.

A tutorial for people with no eyelashes or eyebrows gave Rosie tips on how to apply make-up.

I got a lot of my information off those sort of websites of charities and I think actually that was where I got a link to this YouTube tutorial like make-up that you could try if you’ve got alopecia. You know, “This is specifically for no eyelashes, no eyebrows,” like oh, “You could do this that and the other,” which was where I sort of started with all my make-up tips. But yeah, generally the internet became one of my good friends for looking at things. So just, you know, the odd bit of research if I was thinking ‘oh, I need to back that up before I start talking to people about it’ or ‘oh I wonder what I can do, sort of, you know, how would I make my appearance look better’ and so like improving getting my eyebrows correct first time, you know, what would I do. Sort of go onto Google and just type and find things.

Rosie uses social media to raise awareness of alopecia.

If I’m using social media to talk directly to my friends, then, often I will talk, if I’m talking about alopecia it will be in sort of offhand jokes like oh, you know, ‘I did this really silly thing today where you know, my wig nearly came off, that was quite, you know, that could have been quite funny’ and have a sort of laugh through that. If it’s more of like an open social media so sort of Facebook posts which is generically what my blog automatically does then I just generally use that as a sort of informative, this is what’s happening. This is what my interpretation of it is and what I’ve experienced, just generally promoting it. And then I’ve used social media for other things as well, so it’s now October, but September is Alopecia Awareness Month and sort of throughout that all the sort of alopecia charity pages that I followed would sort of post a lot of things like, oh, you know, ‘Alopecia isn’t you know, it doesn’t stop your life. You can continue living it.’ And so, I would also like share that and raise, try to raise awareness through my Facebook as well. And I think I definitely put a post up like, you know, I don’t completely open up to the entire world about my alopecia, but those who know about it know that at least I’m passionate about, sort of what it is and helping people understand if people could do that all over, you know, it wouldn’t be so much of an issue. But social media is very powerful, depending on how you use it. 

Rosie says it’s important people who think they might have alopecia don’t have to wait too long to see doctors.

The only advice that I could probably give for just generally treating anyone with alopecia, not necessarily young people, but also older people as well is just to have the process sped up a bit more. Because I sort of like had my first GP appointment at the very beginning, but had nearly a month in between before I had my dermatology appointment at the hospital. And obviously at that point I’d lost nearly all of my hair. And I think if somebody hadn’t had the open minded approach that I’d had, I think they’d find that absolutely devastating and they wouldn’t know what to do. They’d probably jump straight at the local wig shop and then get would something that, probably wouldn’t suit them or you know, would have them seriously out of pocket. So I think that would be the only advice really that I would have, is just to have the process sped up a bit more.