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Alopecia (young people)

Getting a diagnosis of alopecia

After finding a patch or noticing a lot of hair falling out, some of the young people we talked to and their parents booked an appointment with a GP. Others left it a while to see what happened in the hope it would regrow on its own. Some people put their hair loss down to a different reason and weren’t worried about it at first. Arti thought the patch of bare skin she felt on her scalp was an old scar. Some people thought they had accidentally pulled a patch out, such as when straightening their hair. If the patch didn’t regrow or if more patches developed, they realised there must be another cause for their hair loss. This was usually the point when they went to see a GP doctor or nurse. A few people looked online about the symptoms of hair loss before they saw their GP.
 

Arti did some online research about ‘hair loss’ before she went to her GP and was diagnosed, as well as after the appointment.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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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.
 
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Rochelle’s family didn’t believe that her hair was falling out at first. It felt like everything was happening very rapidly once she started seeing doctors.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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Did you talk to anyone about it when you first noticed that there was some hair missing?

My mum. I was like, “Mum, I’m losing my hair,” my mum was like, “Oh, Rochelle, you’re chatting rubbish, you can’t see nothing”, “Oh you can’t see nothing, Rochelle, its fine.” And then when it started to drop out I think that’s when the whole family was like, “Oh my gosh”, and when I could feel my skin from my finger on the skin of my head, that’s when I was just so nervous and crying all the-. I think every day I was just crying, I had to put this band on my hair and I was just, over my head, and I was just like ‘oh my gosh’. And then, yeh, my mum, and then me and my mum went to the doctors and then we went to the dermatologist because by then when we saw it actually dropping out – it was all like rush, rush, rush, rush, rush. Because when it’s falling out you don’t really see it until you see it and then by the time it had fell out that’s when everything was a rush. We had to go and go to the doctors go to the dermatologist, try this and try that, and that’s when I tried to look into more research and talking to the people.
 
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Becky initially thought a bald patch was due to over-styling her hair. When it didn’t grow back, she went to her GP and was diagnosed with alopecia.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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I used to scrape it back a lot and it was permanently straightened. At one time, I dyed all the bottom of it bleach blonde and so you think ‘is it hair dye? Is it hairspray? Is it straighteners? Is it blow drying?’ So, at first you don’t go and get it checked because you do just think ‘oh I’ve pulled it out because I pulled it too tight or I’ve done something’. But, then when after a bit when it doesn’t grow back or it starts to become more and more, that’s when I think you realise that it’s not just you’ve pulled it a bit too tight, it’s something else. So you need to go and have it looked at. 

How long do you think that would have been between you discovering the first patch and then when you saw your GP?

I don’t know. It wouldn’t have been long, because I was a lot younger I would have panicked. Well, I can remember panicking. So, it, I would’ve between-, it would have been no more than a few months, because if you think about like your eyebrows or something, if you pluck ‘em out within a few weeks they’ll grow back. So I think if you think ‘oh, I’ve just messed with it too much, I’ll leave it a bit. And then after a few weeks, it doesn’t start growing back – that’s when you think ‘no, there’s something a little bit more to it’. So at the very most it would have been two months, at the very most.
Some people were diagnosed with having alopecia when they were babies or young children. Their parents had noticed symptoms of hair falling out or, in Danny’s case, not growing. Most of those diagnosed at this age said they weren’t too bothered about having alopecia as children, but started to feel more self-conscious as they got older. Grace was diagnosed with alopecia areata at age 10 and says it went “over my head, these words that I don’t understand”. Kayla’s had alopecia since she was 4 and thinks the word ‘diagnosis’ sounds “so serious” whereas she sees it as “just part of my life”. Elizabeth says she was “lucky” her bald patches weren’t visible for most of her childhood as “it meant that people didn’t pick on me”.
 

Annie Y was three years old when her hair fell out and she was diagnosed with alopecia.

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Age at interview: 23
Sex: Female
Age at diagnosis: 3
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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.
Others were older when they developed alopecia. Many people said they felt shocked and upset because the hair loss made them look different to the way they were used to. Meghan remembers that she “wasn’t ready to tell anyone” or talk about it for some time. Both Krista and Emma cried often in the weeks following their diagnoses. Most people hadn’t heard of alopecia before or, if they had, instantly thought of losing all their hair and felt scared. Emily remembers her GP nurse had to look up the condition which gave her “the impression that it wasn’t that common”. In contrast, Becky’s doctor diagnosed it almost immediately which reassured her “it might be a bit more common than you’d think”. Others said they weren’t fazed by a diagnosis of alopecia. Rosie didn’t see it as a “big issue” or “much of a bother”, but she did find it intimidating going to a hospital to see a dermatologist. Ben wasn’t worried about small bald patches at first but found it more difficult as patches got bigger and merged.
 
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Rochelle felt she was given no further help after being diagnosed with alopecia. She would have liked more information from her doctors.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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They could have been more caring, not just “Oh okay, it’s alopecia.” More caring, especially at that age of 14 and losing your hair, you’re gonna feel very-, you’re gonna be very upset, like I was distraught [laughs]. So they need to be more caring. Give more information, more research, not just to the person who's suffering with alopecia but also their, the person they’re with – so they could have given my mum something to maybe help with me suffering with this or even normal recommendations.
Many said they weren’t given much information when diagnosed with alopecia. Emily has alopecia areata and says it was “disconcerting” to be told that you have an auto-immune disease and then left without support. She took to looking online for more information to make sense of the diagnosis. Rosie says her GP was really useful and knew a lot about alopecia areata which he explained to her. Sometimes the GP said they would refer the person on to see a dermatologist (skin specialist) who often confirmed the diagnosis. The wait for this could be long and some found they had lost a lot more hair by the time they saw a dermatologist. Rochelle was given a leaflet to read while she waited for her dermatology appointment to come through, but says she would have preferred her GP talk her through it. Key questions young people had about alopecia included:
  • Why is the hair falling out (causes and triggers)?
  • When will the hair loss stop?
  • How much hair will I lose?
  • What can be done to stop the hair loss?
  • Will the bald patches grow back? 
  • If patches do grow back, will the hair fall out again?
It could be disappointing to hear that there are no definite answers to these questions. At the same time, some found it unhelpful and dismissive to be given false reassurance that their hair would grow back and there was “nothing to worry about”. While it is true that some people’s hair did grow back, this wasn’t the case for everyone we talked to.
 

Professor Moss talks about the prognosis of alopecia and likelihood of regrowth.

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Sex: Female
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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.
 

Annie X says you shouldn’t ‘wish away’ your time in the hope alopecia goes away. She thinks doctors need to be aware of this when they talk about regrowth.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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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.
 
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Laurel found it difficult hearing some of the things her doctors said about alopecia.

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Age at interview: 17
Sex: Female
Age at diagnosis: 15
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Can you remember the first appointment that you had and sort of what that was like?

Yeah. It was, I think it was, it was really hard because it was the first time I’d really been told I had alopecia and that there was no cure and that they didn’t know why it was-. Well they told me it was stress that was causing it and that it can be like stress from up to six months before it happens and stuff. And that was really hard to understand cos I was only 15 and my hair was like my favourite part cos I used to dye it all the time and, and everybody. And I was kinda scared for everybody to say, “Oh, it’s because you dyed it all the time,” but it wasn’t cos even the dermatologist said that it doesn’t cause it. But then I just got really scared when he told me there was no cure. And that’s all really that kinda went through my head. He was more talking to my mum than me.

Some people had blood taken at their first appointment or soon after, so they could be tested to see if there was an underlying condition or issue causing the hair loss. Emily’s results came back showing she had low iron in her blood and she was given a supplement. When she returned for a check-up blood tests, the results showed her iron levels were normal but her alopecia patches continued to grow.
 

Annie X had blood samples taken shortly after being diagnosed with alopecia.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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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.
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