And it was just this big meet up of everyone and they kind of put you into-, the adults went and listened to speeches from dermatologists and things like that, and then they put young people and then like children into kind of three different groups. So, cos the main outcome that I had for the day was to meet people my own age with alopecia, cos I never or like meet girls my age that had had alopecia, because I knew that boy but we weren’t like friends, but I wanted to have that kind of- almost like a pen pal type of thing. I wanted to have that person that I could be like, Look, I’m really struggling, have you got any products that you’ve tried? Have you bought a new wig recently from anywhere that you wanted to-, that you could share with me type of thing?

And yeah I’ve met one girl that I keep in contact with, which is, I’m so glad that I got that out of that, because I think it, even if it was just one or two people I think it’s really, you kind of-, it makes you feel like you’re not alone, and you’re not the only, I think the big thing for me was that I wasn’t the only young person that was suffering with that, because it felt like I was, and I felt like I was the only person my age that was going through this and nobody else, why me, type of thing, why isn’t anyone else why haven’t I met anyone else that has it? Is it, am I the only young person, or is there-, is it only really typical in older people or younger people, type of thing? But you’re just kind of wracking your brain and you’re like I really need someone to talk about this’ cos obviously I had friends and stuff, but they don’t really understand what it is to have this condition that affects your whole life, like you’d they could talk about it with you, and you could be like, I feel like this, I feel like that, but they can never sympathise with it, like it can be never be like, Oh yeah, that happened to me the other day when I was like this, and I was like that cos that’s never really how it worked.

So, I think finding that other person to kind of-, we don’t even talk that often, but I think when you do it’s kind of like, Oh yeah, I can chat to you about this and chat to you about that, and you get it. I think that’s the type of thing, it’s that you feel like you’re kind of alone in it a little bit sometimes. So, before I contacted the charity I felt very kind of isolated, and like I was the only person in the world that had this, so definitely finding someone else to talk about it was a big deal.

I’ve had two jobs, two main jobs. I’ve had a job in a golf club, in like the kitchen type of area, so is it never really been a problem because at that point I still had hair, so I just and you have to wear it up anyway; so, you had to wear it up and that was just matter of fact, so it didn’t really matter what it looked like. But now, I started the job that a part-time job that I currently have, last February, so I’ve been there a year now, but at the beginning I still had my own hair. So, I think it was kind of good in a way because I have to wear a hat, like a skull cap, I think they’re called, because it’s in food service. So, I have to wear that anyway, so that was kind of almost like a comfort blanket because I knew that once I got in work I could put this hat on and nobody they could only really see the bottom kind of ponytail bit of my hair. So, that was quite comforting.

Yeah, it kind of was the time consuming and it was kind of like, if it didn’t sit where I wanted it to. Before I went to school I’d feel so likeI’d probably have like a teenage strop in my bedroom, like, “Ah I don’t want to go to school because this” I’m almost I’m having a bad hair day, but it was kind of a constant bad hair day that I kind of had to maintain. But I think, yeah the time consuming aspect of it, having to like wash it, even though obviously I do still shower. But like, the having to wash it and kind of look after it, and definitely the maintenance of trying to cover it and stuff was very much a big part of it.

I know someone from school, completely forgot that, and he-, in the last I think it was probably about the same time as me, which is quite weird, but his hair started to go really patchy and he literally just shaved it off and it was just that’s just the way that he is now, and it just looks like he’s just shaved it really, really short but really doesn’t have any hair. So, I think he was he was quite lucky, but I know that he’d kind of suffers in the same way that I do, so we kind of giggle about it like, “Oh how’s your hair doing? Oh how’s your hair doing? Oh” He always wears hats and stuff and I’m like, “Oh yeah, is that cos your head gets cold?” I’m like, “Yeah, I get that; I understand that.” But I think in the way that, if a bald boy went out; if they kind ofit was just their hair, people would be kind of be like, “Oh yeah, he’s just shaved it really short.”

And then I went to a festival with my friends, I went to Reading festival, and I didn’t want to take my wig with me because it was as I said the festival was in the August, and I must have got my wig in the May, so it was only a couple of months old, and I was like, “I don’t” and because it was quite a significant amount of money. I was like, “I don’t wanna take, I don’t wanna take this wig to the festival cos I don’t wanna ruin in, and then what happens if I come back from Reading and I don’t have a wig, and I can’t go out?” and stuff like that. Because it was quite towards the end of the holidays, so I was like, “Oh I’ll have to go what would I do at that school?” So, I didn’t wear my wig at Reading festival I wore kind of bandanas and stuff like that. But I think, because we went in such a big group there was about twenty of us I kind of had that support network round me. So, we kind of made a fun made fun and games out of it and, I think that through that it was kind of like a security blanket, that I had all these people round me, and if anyone kind of said anything funny, everyone would be like, “What do you think you’re doing?” So, I’m veryI’m very, very lucky, I’m very blessed to have those people round me to kind of support me through that. But I think without that I would have been very self-conscious.

I think it was mainly after Reading and stuff, so obviously there were going to be pictures of me without my wig on. So, I was like, ‘OK I kind of need to prep this; I need to kind of see what’s, what do I want on there. People asked me, they were like, “Oh yeah do you want us to tag you in them? Do you want it on your Facebook?” And I was like, “Do you know what, just go for it, because it is a part of me and that’s what you express on there don’t you, it’s you?” However much or however little you want to express I suppose, but yeah, I think that’s really important. And then I ended up putting so during Reading I put on the back of my head, ‘I’m bald, let me through,’ or something like that. So, someone took a picture of that on a disposable and I now have that as my header, so as my top image. So, anyone who goes onto my Facebook or anything will be able to see that whether they’re friends with me or not, they’re going to know unless they think it’s like a trendy image or whatever. But and then in the in September it’s Alopecia Awareness Month, so for that I put, as my picture, I think it was like four pictures of me, like various from Reading, from holiday, like pictures I’d taken of myself or whatever, in this collage with the ‘September is Alopecia Awareness Month,’ and that got like over a hundred likes, like that’s quite a lot for me, that’speople were liking it because I think, I’ve had a lot of positive feedback about it as well, about the way that I handle it, especially on social networking sites.

I don’t wear my wig to the gym. I did for the first cos I went to-, I joined a new gym, so I did for the first couple of sessions, but it was just so uncomfortable. I was like this isn’t even worth it’ and I think people wear like-, so I wear like a kind of headscarf kind of thing, people you can buy them on holiday; the type of thing that have like ties on the back to stop children getting sunstroke; but not like a swimming cap, but it’s kind of like a cottony material, and I wear those to the gym cos it’s kind of breathable. But people wear kind of headscarves and headbands and all sorts of things to the gym anyway, so I feel like- people kind of give me a first glance, kind of like ooh, oh OK, like she obviously doesn’t have any hair’ and then people tend to not stare. But I find that I’m quite a confident person anyway, so if somebody did stare at me, I’d kind of be like, Are you OK? Can I help you with anything? Can you kind of stop looking at me? I wouldn’t be that abrupt, I’m not that confident, but I’d kind of be like, Are you OK? Are you trying to get my attention? kind of thing because-. And then they’re kind of like, Oh no, sorry, aah, because they don’t really know what to say, and you’re kind of like, Well just leave me alone. But there are days where it does get so frustrating cos you’re just kind of like-, say specially at the gym so people kind of look at you, and you just think ‘I just want one day off, I just want to come to the gym and I just want to be- and I just want to exercise, I don’t want anyone to look at me, and I don’t-‘ yeah, that kind of thing, I’m just like aw.

I remember we went to the hairdressers, cos I’ve had the same hairdressers for years, and he was like what did what happened? We kind of wanted to show him and kind of show him what’s going on and stuff. And we were talking about it, and then my dad was like, “Right, tomorrow” we went to Selfridges on Oxford Street, cos we knew that they had a hair clinic, and my dad was like, “Right” It was kind of like a short term fix type of thing, so it was kind of like a pamper. So we kind of went to Selfridges and I got my first wig, and it’s really lovely in there cos you have your own consultancy room, so you’re not like bald in front of other people, because I think was because it was such a new thing for me as well, I was like, “I don’t really feel comfortable being in the main kind of salony bit.”

So you get go into the consultancy room, and they match you with a colour wig, and then he was likeI think it was slightly too long or something because I was, my hair was quite short at the time cos I’ve never had it quite, very long, because it had always like fallen out, so I just kind of kept it quite mid-length. And they kind of cut it for me and stuff; and then I had that wig for a little while, and then I’d never been told that I’d be eligible for wigs on the NHS by my GPs, or by my consultant, or anyone. And through the Alopecia UK charity I was I found out from another girl that I was eligible to go and get a wig on the NHS. So that was quite a long drawn out process cos it has to be applied for through the, what’s it called There’s like loads of forms and stuff and then you kind of I got sent to this hair studio, and they were like, “Right, this is, these are the ones that you can have,” and there wasn’t I think going from Selfridges to like this little hair studio, was probably quite a bit of a shock cos they were like, “We’ve got this colour, and we’ve got this colour, but it’s not quite the colour that you want,” and you’re like, “What give me whatever you’ve got really.”

But I think it’s weird because as I’ve lost more of my hair and I’ve been able to wear a wig, I’ve been less conscious of it, because I think I used to be so cos I used to have like backcomb my hair and then kind of hairspray it down to make sure that it was almost like a helmet. It was like a wig of my own hair to try and mask the appearance of the patches. But yeah, I’ve become more confident since I’ve got a wig which is really weird because it’s more-. As my alopecia’s got worse, I’ve got better with it. But I think that it’s only because of the support network of my friends and having a long term boyfriend and stuff like that, that they’ve kind of helped me through it.

So, I’ve had a lot of positive feedback about how open I am about it, because it’s part of me, and I think you need to put that on there, cos there’s so much in the like reported about how people put all these great things on there, like, Oh yeah, now on holiday in Santorini and now I’m in up the Eiffel Tower with my boyfriend, and I think you need to put on there what’s actually happening, like people need to know that I don’t have any hair, because that’s part of me and that’s just how it works, that’s just who I am. So, I think, yeah, it definitely helped with telling people about the condition because it means I haven’t had to-, especially people from work, because it means that they’ve kind of seen it and there’s enough on there for them to kind of get a gist about what it is, and if they wanted to look it up then they could; but not like so much that it’s kind of overwhelming and like, Oh yeah she’s just writing about it all the time, cos I don’t put it on there all the time. It’s only the pictures really that are taken from events where I’m not wearing my wig, type of thing. But yeah, I think I’m pretty open about it.

In September, it’s Alopecia Awareness Month so for that I put, as my picture, I think it was like 4 pictures of me, like various from Reading, from holiday, like pictures I’d taken of myself or whatever, in this collage with the, September is Alopecia Awareness Month, and that got like over a 100 likes, like that’s quite a lot for me, people were liking it because I think-, I’ve had a lot of positive feedback about it as well, about the way that I handle it, especially on social networking sites.

The transition into secondary school someone from my primary school had spread a rumour that I had cancer and that’s why I didn’t have any hair. So, that was quite a difficult one because you had to kind of overcome that and think that is such a nasty thing for someone to say.

How did you cope with that? What did you do or?

I think I didn’t really find out that they’d said this until probably like a year or two later because nobody had even questioned it with me. I think because it was we were so young and they wouldn’t want to like ask me about it, because I think you don’t really know anyone, but it wasn’t until later on when but they probably didn’t even know what they were saying; they’re probably, that was probably a rumour that was going round at primary school that they kind of just brought into this new school. Like, oh yeah, as matter of fact, kind of, Oh yeah, she had cancer, because they weren’t really educated about it.

Minoxidil, something like that, and she was like, We can, we can’t prescribe it to you, but you can buy it really cheap online. So, I think I had the ladies one first, and then she was like, No, don’t bother with that, get the men’s one, and then I used that. I think that does work but it is quite a slow process because it’s not very strong; cos you can buy it over the counter can’t-, or even just in a drugstore, can’t you? So, it’s not really like-, I suppose it’s not really like a proper, I don’t really know. It’s not like a proper I don’t feel like I’m being prescribed something that I can take and it can-, it’s going to do something, but I probably psychological as well, and subconscious that putting this on I do feel like it does work.

So then after that I went into a short course of oral steroids, which I think was about three or four months, something like that, which was-, I think it was starting off at 40 milligrams, and then decreasing every 3 or 5 days, something like that, by 5 milligrams. So, I don’t know whether the maths works out, but it was kind of those kind of figures. And I believe that did stimulate some kind of growth, but because obviously it’s such a short course because I can’t, they can’t prescribe-, you can’t get the course of steroids for longer than that time ‘cos of the side-effects, which are completely understandable. So, I do believe that that did stimulate some kind of growth.

But then it was a lot of effort to kind of maintain because I was very kind of precautious really cautious of the side-effects of it so. But mostly the weight gain that I knew that could come with it. So, I wasn’t trying to diet or anything at that time, but it made me more conscious of what I was eating to kind of maintain, rather so I couldn’t have what I was eating all the time because I would-, I wouldn’t gain usually but I knew that when I was taking the steroids that that could have made me gain weight and that kind of wasn’t very appealing to me really, cos I used to be quite self-conscious anyway, so to have that on top of the steroids might not be working, and now I’ve put on weight and self-image I think.

There’s only the really one that I haven’t and that was the irritant applied to the scalp. Because I have quite a high pain threshold, so I didn’t really mind the injections or anything like that, because it was kind of like brace yourself, it’s going to be worth it. It’s kind of a sharp scratch, isn’t it? It’s like getting a piercing or getting some blood taken, which I have quite regularly because they’re like, Oh yeah, your iron levels might have changed, we’ll check these, or like, Your glucose levels. So, I have loads of blood tests as well but nothing ever changes. But yes, so I was just like, Oh, let’s just do it, do it, yeah, and then so, I didn’t mind that. So, the irritant I didn’t really fancy because it sounded really uncomfortable, which for me is so much different than pain if that makes sense?

OK

So, I knew that the injections would be kind of painful for a short amount of time, and that it might be a little bit sore afterwards, but if you kind of cover it up and we let it heal and stuff it will be fine. Whereas it sounded I don’t know whether I got completely the wrong end of the stick, but this irritant sounded really uncomfortable, and that I would be kind of un-, this sustained uncomfortableness for a long-long amount of time. So, I just really didn’t fancy that [laughs], and I kind of thought is this worth it even if it doesn’t work?’ So, I think the short amount of time that the injections I thought right, OK, I can do this’, compared to the irritant. Well I was like nah, I don’t think this is for me. The thought of these-, sitting there and being uncomfortable, I don’t think it would be worth it. I’d rather-, and then the steroids and stuff, they were fine because I didn’t react badly to them at all. I don’t even think I noticed kind of the side effects at all, which is very good for me, but obviously might be different for other people. But yeah, it’s only really the irritant I’ve turned down.

It must have been steroid injections into my scalp, which was kind of when it was more patches, so that was quite painful. And that was-, I can’t remember how long the course was probably not very handy. It must have been quite a short course cos that was when it started to kind of really fall out quite rapidly. I don’t think it was because of that steroid; I don’t think it was because of that treatment. And then, as we could kind of see it deteriorating, she was like, Right, OK, I can’t do this as much. I can’t do as much scalp as you have bare. So she couldn’t- she was like, There’s no more, I can’t do that many steroid injections into your scalp, it was only really when it was those kind of like digestive biscuit size patches, something like that, rather than patches that were kind of two digestive biscuits, something like that, that may have spread across the whole of the kind of the back of my head. She’s like, I can’t do that.

Then I kind of Googled it and I didn’t even realise there was this whole world out there of kind of like papers and research into these drugs that haven’t yet been released. So, then I found myself doing this research into these drugs, and then going to my consultant and saying, Can you like can you give me this? I’ve seen this on the internet, can you give me this? And she’s like, I haven’t even heard of that, let me Google it. Googled it and then she was like, Oh, it’s in this well regarded medical journal, so it must be pretty serious, they seem to be looking into it, but there’s noth- there’s nothing I can do now, I can’t justify giving you a medicine that’s meant for blood pressure to treat your alopecia, because there is this one in a million person that has had miraculous regrowth. But yeah, I think the freedom of having- of being able to kind of have a look and snoop around and see what everyone, what is actually going on in the field of medicine behind what this GP or what this consultant has said to me, was kind of really freeing and kind of-, even though I couldn’t have it, I think it was comforting to see that there was other things out there that weren’t necessarily being offered to me right now, but that could be offered to me in the future.

I’ve only just turned eighteen really, so I’ve only just been put into the adult dermatology clinic. So, before then I was in the children’s dermatology, and there was, I think it was less busy, or something like that cos I wasI seemed to be able to having more frequent appointments than I have been now. I don’t know whether that’s because it was less severe, so there’s kind of more hope of giving treatments and stuff like that, that could kind of see if it will induce it. So, say if I was having steroid injections, I’d have to have them every set amount of period of time; I can’t remember if it was three or six months, something like that. But I’ve been put into the adult dermatology clinic, and throughout the whole of the children’s-,when I was in the children’s department I had the same consultant, which is really, really good, so there’s good continuity throughout the whole of my treatment really.

I went to the appointment at the dermatology clinic, which is at a completely different hospital, and it was with a different consultant, and it was kind of like, I had to try and explain my story again really, because I had to kind of explain all whatthey didn’t even have what treatments I had had, or my past experience was la la la. So, I had to, yeah I had to try and explain them, and they were kind of like, “Oh yeah, there’s nothing we can really do,” and you just think there’s ‘I’ve come all this way and la la la, to try and see if there’s anything they can do. But I’ve been told that the next appointment will be with this, the same consultant I had in the children’s dermatology clinic, but it is quite disheartening because you think, ‘Surely there should be kind of some kind of protocol to kind of help people transition. Because it was a massive jump being taken from children’s to adults, cos you’re kind of thrown into the abyss with all the other adults with various skin conditions. So, it was quite difficult, but yeah I’m not on any treatments at the moment.

Did you notice any other differences when you were moved to like the adult dermatology clinics, in terms of like how the staff explained things or?

Yeah, cos obviously in the children’s derm- children’s dermatology clinic, it was all very bright and kind of colourful, and even though, obviously it’s not for me as a seven-six-seventeen year old, it almost does make the experience better because you’re kind of in this environment that’s been made comfortable for children. So, for someone who’s going there a bit kind of nervous, or what’s she going to say, what are we gonna what am I going to have done; it was very kind of nostalgic kind of calming and like, yeah basically nicer. And then to go to this this adult dermatology clinic, it was very kind of dark and gloomy, and I think it was almostit’s probably the juxtaposition of both of them together, is that they probably made the other one look darker, because the other one was so kind of bright and for children and stuff. But yeah it was kind of very much the you’re kind of in with the rest of them.

I’ve had alopecia since I was around ten years old, alopecia areata. I suffered from pneumonia, and I went into hospital and got treated for that, and I’ve kind of believed, ever since that it was like my body went into shock, like shocked my system, because before then I’d never had any, I never had any problems with it whatsoever. And I kind of started noticing coin sized patches, I suppose my mum did cos I was quite young, and we went to the doctors and they were like, “Oh yeah, this is kind of the process that your body goes through cos it’s been under such pressure, and then you’ll recover from it.”

I remember going to my GP and him telling me what it was and stuff, but apart from that I’m not really sure. So, that was probably about two years in to two years into having it, something like that, cos I think those first couple of years were kind of like, “Oh, it’ll go away. It’s kind of like; we’re just waiting for the kind of your body to recover from having this ill-having this pneumonia.” So that was kind of the waiting and then this kind of like, “Oh no, there there’s definitely something wrong; there’s definitely something more than this; just these bald patches appearing,” and then that’s when we went to the GP and got told what it was.