I just sort of typed in what I had and looked at it on the Internet. And there was a lot of stuff and I don’t think I kind of made sense of it and that sort of. I think always when you sort of look at things on the internet, it kind of scares you into going to see the doctor [laughs]. So I think that’s what I did [laughs] cos obviously there’s lots of stuff coming up on the internet. And lots of general hair loss, cos I didn’t really know what to type in about patches of hair being lost. I did type that. I think lots of just general hair loss things came up and lots of, you know, remedies or like special shampoos and stuff which would help with normal hair loss but not with alopecia.

Yeah so then obviously when I went to the doctor and they told me it was alopecia, I did more research on that and there is quite a bit on the internet about it. There’s the alopecia charity, UK charity which they have a lot of information on their website.

I think maybe I’m lucky that it fell out then because I probably had absolutely no idea what was happening and like didn’t really care. Like I don’t, I don’t think when you’re three you would like, are aware of anything like that. And so I just, for as far as I can remember this is how it’s been so, there wasn’t like-. I think it would be really tough if you were 15 and all your hair fell out because you know what it’s like to not have it, and know what it’s like to have it. Whereas I don’t really know what it was like to have it so I don’t-, I think that makes it a bit easier.

That’s very difficult. And that’s always something people want to know. If we see a child who’s just got a small patch, or a young person with just a small patch that hasn’t been there for very long, we’re usually optimistic that it’s going to regrow. If we see someone who’s had very extensive alopecia for a long time – you know, two or three years – then it’s less likely to regrow. Though it sometimes does. And if someone’s got alopecia universalis, it is quite unlikely to regrow completely. But we can be surprised. And people with alopecia totalis will have started off probably with just one or two patches, and we may have told them it would regrow, but it actually it didn’t. And on the other hand, sometimes people with very extensive alopecia, even totalis, it can completely regrow. So it’s very much an unknown.

How about in term of recurrent hair loss? People who’ve had regrowth, and then if they have another patch develop?

Again, I think if it happens on several occasions again that would tend to make us think this is-, it’s gonna go on. You know, it’s really the past history that is informing us. So if it’s already gone on for a long time, it’s likely to continue. Whereas if it’s very new, then there’s a chance that it may recover. There are some patterns that actually are less likely to recover. And if people have it in what we call an ophiasis pattern and what that means is a band affecting the back of the head and over the ears, over the temporal regions, that tends to have a worse prognosis. That tends to be a bit less likely to regrow.

All I remember is that it was a man and he, both my parents were there, and he said, It will probably take-, he said, It’s alopecia areata which means that patch will probably take a year to sort out, but what he didn’t know was that it was going to be more than one patch and carry on. So, yeah, he kind of gave me false hope, because I remember I was like counting down the months until the year was over and then it just carried on after and after and after a while I stopped counting. Which is another thing I want to say, because I put a timeframe on it and that was really-, that was really frustrating because I was kind of wishing the days away, but you kind of have to, what I’ve learnt now is that you can’t ever, you don’t ever know when it’s going to stop or start again. So you have to just let it, let it happen and just be patient with it and sort of don’t let it stop you, because for a while I was like, I’m not going to do this, I’m not going to go out, I’m not going to go to parties, I’m not going to buy these clothes, I’m not going to wear these clothes until my hair is back’ and you can’t do that because if that happens for the rest of your life, then you are always waiting to live.

I don’t remember much about them, but I do remember I had to go to two doctor appointments. The first one was with just there was one woman in the room and my mum, and my mum basically said, She’s losing her hair, do you know what it is? The doctor took one look and said, Yes, it’s alopecia. There’s nothing we can do. We can give you a prescription for steroids, but there’s nothing else we can do. We’re going to refer you to a dermatologist and we’re going to ask you to have some blood tests just in case it’s for anything else. So then I remember my mum bursting into tears and I was just really embarrassed because she was just crying in the corner and they had to get another doctor in to say, It’s probably nothing serious, but we are going to have her tested. So then I had to go to another doctor’s appointment at the same doctor and they just took-, they took a lot of blood because I remember-, because I’m really bad with blood and blood tests so I was like, Get away [laughs]. And they, but they came back and there was nothing, there was nothing wrong in the bloods, so it was just auto-immune.