The main place people talked about having alopecia was the scalp. Other areas of the body where hairs grow can be affected too, including:
- the face – eyebrows, eyelashes, nose hair, beards and moustaches
- body hair and pubic hair – arms, legs, armpits, chest, stomach and around the genitals
The subtypes of alopecia areata are based on the body parts affected as well as the severity (how much hair loss occurs). For example, alopecia totalis is loss of all the hair on the face (e.g. scalp, eyebrows, eyelashes) while alopecia universalis is hair loss everywhere on the body.
Alopecia on the scalp
All of the young people we talked to had experienced hair loss on the scalp. For some, this was the only body part affected but others had hair loss in additional places too. There were different parts of the scalp and patterns of hair loss, including bald patches and sections along the hairline, parting, temples, crown and nape of the neck. Meghan remembers her first patch at the back of her hairline was shaped like “vampire fangs”. Depending on where the alopecia was, it could be difficult to check bald patches on the scalp and apply topical steroids. Regrowth was often uneven and in different patterns, making hair styling difficult for some.
Even though Meghan says partially-shaved hair is in fashion at the moment, she feels the bald parts of her scalp (with no stubble) wouldn’t be seen by others as acceptable.
Even though Meghan says partially-shaved hair is in fashion at the moment, she feels the bald parts of her scalp (with no stubble) wouldn’t be seen by others as acceptable.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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I think ‘cos the stereotype of women having like the typical one is like long hair, like full head of hair, like whereas men it is more acceptable to be bald ‘cos of like male pattern baldness and like old age and stuff. But with women, I think it’s a lot, lot harder ‘cos that stereotype. But if you see, I see people down the street who have chosen to shave their head and that’s cool, but then because I haven’t chosen to shave my head and it’s not like stubbly that’s not OK. Like that’s what I don’t understand like all this fashion is coming in of people taking off half the head or models with like with shaved head, but because they have that tiny like not even inch like tiny, tiny bit of a stubble, that’s more acceptable and that’s, that does wind me up.
But I have the where I’ve got mine is exactly where people shave off, but I can’t shave mine because people think it’s weird.
Becky talks about the parts of her scalp which have been affected by alopecia.
Becky talks about the parts of her scalp which have been affected by alopecia.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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It tends to be a lot around my hair line. So, a lot at the side just above my ears it tends to go there a lot. And I do lose it at the back quite a lot. My hair, when it grows back normally at the back is like really fine baby hair. My hair at the back is never like the rest of my hair, so I’ve lost it-, every time I’ve lost it I’ve lost it at the back at the nape of my neck. Tends to be random patches on the side and just up from the back. I’ve never lost it on the top, never, touch wood. Never lost it on the top. It tends to be small patches, like I say, 10p patches. But they do sometimes merge into one, which is what happened when I lost it a lot at the back. So it tends-, but it’s-, it tends to be more at the back and the sides, but touch wood it’s never been right at the front near my parting or on the top.
The wind and cold can be unpleasant with alopecia on the scalp. Rosie says she’s always the first to notice when it starts to rain if she goes out without a wig on, with a “raindrop just on the middle of your head”. Sunburn on the scalp could be an issue too and meant using plenty of sun-cream to protect the skin. Some people felt uncomfortable about others seeing their patches or whole areas of the scalp without hair. A few young people had experiences of other people touching their bald scalp without asking. Ben says he doesn’t mind if someone wants to feel his scalp, providing they get his permission first.
Many people tried to cover small patches by styling their hair, including changing their parting or using hairspray to fix hair over a patch. Covering up bald patches could affect everyday things like the way a person sat and turned or moved their head. Lots of people thought that hair is often a big part of identity and some found it difficult to see themselves in mirrors or photos without hair on their scalp (see also about the emotional impact of alopecia). Laurel doesn’t like to wear certain types of clothes anymore as she thinks it looks “weird” without hair covering her neck and shoulders. Elizabeth tucks her hair into a scarf worn around her neck to stop the wind moving her hair around and showing the patches. Krista often wears a scarf as it’s “like a comfort blanket”.
Kayla worried that others might see bald patches on her scalp, which affected lots of things she did.
Kayla worried that others might see bald patches on her scalp, which affected lots of things she did.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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I mean before I got wigs, I always used to think like it’s quite weird, even like when I’m in school, the way that I sit at my desk, purely because someone behind me, if I look down or like, it was like that much integrated into my mind, it was like the way that I stand and the way that I turn my head like sometimes. So it was kind of like 24/7, I couldn’t really forget about it [laughs]. Yeah, so it was kind of annoying because it was like, even little things, it’s like I just wanna go a day without thinking about it. I don’t know [laughs]. Like now I can walk down the street and have the wind blow and it’s okay. So things like that so it’s like, but back then it was like, if it was a windy I would sometimes have sick days because I couldn’t hide it if it was windy. And you, I guess you never know what way the wind is going to blow. If it blows the wrong way then and it might be in front of the wrong person who’ll be mean to you about it, and so on. It’s just kind of like a lot of things like that or, yeah, again just like any form of swimming or anything like that. Just little things just, I just automatically, it meant I didn’t do [laughs].
Annie X adapted her use of hairstyles, bandanas and wigs as the patches on her scalp changed location.
Annie X adapted her use of hairstyles, bandanas and wigs as the patches on her scalp changed location.
Age at interview: 15
Sex: Female
Age at diagnosis: 11
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Each time I changed something, so I had to-, so when it was the patch on the top of my head, I pinned the front of my hair back. And then when I lost it at the back, I had to like twizzle it and put it up in a clip. But every single-, and then I went to the bandana and went to the wig and went to the bandana again. But every time, I remember, I was so nervous to go to school just because I had changed the way I looked slightly.
Elizabeth didn't tie up her hair when she played football because she didn't like others seeing the bald patches.
Elizabeth didn't tie up her hair when she played football because she didn't like others seeing the bald patches.
Age at interview: 20
Sex: Female
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I used to do football, I haven’t played it in four years and I miss it so much just because it wasn’t practical. I made the decision when I was 16 that I was gonna stop playing football because of church because of football games moving to a Sunday morning because when you’re 16 you go from girls to ladies. And but I would never put my hair up for a football game which meant that my hair got in the way, it got in my face in football but it was just I was so uncomfortable with it even though the majority of the girls in my football team, at least half of them I’d grown up with so knew about my alopecia but I was like ‘I’m not-, I’m not doing it’ because actually there’s parents, there’s the opposite team, there’s half of the other team, no – half of my team even that don’t know and so I didn’t do it. Like now if I got to the gym I’ll quite happily put my hair up and like it’s me, I don’t really- I don’t really care anymore. Like this time last year my alopecia wasn’t visible unless I put my hair up and yet I still was like ‘you know what, I like putting my hair up – I’m gonna do it’ but now I wouldn’t put my hair up unless I was going somewhere like the gym.
Hair loss on the scalp wasn’t always seen as an issue. Emilie likes her look and enjoys expressing herself through clothes and accessories. A few people talked about the pleasant feel of stroking their bald areas, the breeze and moisturising their skin.
One upside for Emilie of being bald is enjoying the feel of wind on her skin.
One upside for Emilie of being bald is enjoying the feel of wind on her skin.
Age at interview: 18
Sex: Female
Age at diagnosis: 4
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I’m very much a winter person, I love winter, I love it being cold, I love being able to layer up cos once again with the clothing I like to express myself with clothing, in summer I can’t do that as much cos, I get too hot so I just wear a playsuit or, you know, a pair of shorts, I can’t really do much. Winter, I can really express with layers and jewellery and tights and shoes and all sorts but also once again the colours I love-, just love it being cold, people struggle with the wind because-or I forget people struggle with the wind because they’ve got hair especially in the car when they’ve got the window turned down they have to keep doing this [flicks head].
[Laughs]
Trying to keep their curls from going out and, you know, kind of sitting like this [leans back] and I’m sat there just enjoying the breeze on my face. And I turn around and go, “Oh, oh, sorry, d’you want me to shut this? No? Okay then.” [Laughs]. So its’s a struggle for other people but for me it’s just never a struggle.
Ben moisturises his scalp and is pleased when people say how soft his skin is.
Ben moisturises his scalp and is pleased when people say how soft his skin is.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I think the thing is like as I’m going to look like this I was thinking I’m trying to make it look the best as possible. So I don’t want to make it get to a kinda dry scalp or anything or, you know, make it look unpleasant. So I just do moisturise and I- I don’t like religiously- religiously do it like every day but like every now and again. And I do-, a lot of people when they do ask to touch my head or whatever they do like-, they say it’s like really soft and that’s quite-. It’s not- people quite- find it quite pleasant I guess. So it’s almost like something I can continue to do because it’s not unpleasant. Do you know what I mean?
How does that make you feel when somebody sort of says that? Is it like a compliment?
Yeah, I- yeah [laugh] weirdly I think it, I think it’s like a compliment. It’s like saying, “Nice hair,” to me I guess. Cos it’s like, you know. Like a lot of girl’s, I said a lot of g-, most of my friends are girls and like, you know, usually just like to like stroke it. I don’t know cos their envious of the- the hairlessness [laugh]. And I’m like-. There’s, there’s some people just amazed by it like I have a friend who’s like, “How is it so soft?” And I guess that’s kinda nice in a way cos it’s not an insult at all really.
Laurel liked that her ear piercings were more visible and she got more done.
Laurel liked that her ear piercings were more visible and she got more done.
Age at interview: 17
Sex: Female
Age at diagnosis: 15
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I liked getting piercing in my ears as well because you can see my ears now that my-, you had no hair. So it was one of those things that everybody noticed, and they didn’t really notice that my hair was up all the time unless they knew.
Before my hair all fell out like I had quite a lot. And then I got my tragus and the outside of my ear done because it was just really pretty and I actually bought loads of new earrings as well because you’d see my ears more. So as to say that if your ears are prettier then, I don’t know, just kind of distracts the attention away.
Alopecia and the face
Some people had patches of hair loss in their eyebrows and eyelashes or found these all fell out. Ben says it was hard losing his eyebrows and eyelashes at first as he felt it made him look “more weird”. He’s more comfortable with it now but thinks other people would question his alopecia a lot less if he still had eyebrows and eyelashes. Beth agrees it was hard explaining to people why she didn’t have eyelashes.
Kayla, Hannah, Krista, Emma and Beth all had their eyebrows tattooed on. Others used make-up to fill in or give the impression of eyebrows and eyelashes, while Ben and Danny leave theirs as they are. Some of the young women talked about fashion trends for big and defined eyebrows, which often made them feel more self-conscious about their own. Rosie says eyebrows “frame your face” and she’s learnt how to draw and stencil them on. Although this can be time-consuming, Rosie’s not interested in eyebrow tattooing at the moment as she says she’s at an age where her face is changing shape and she worries they would look unnatural. Michael’s mum and his female flatmates helped teach him how to fill in eyebrows with make-up. Emily and Krista had lost some eyelashes but found they could use mascara to pull the lashes over the gaps. Beth wore ‘fake eyelashes’ when hers had fallen out, but worried this “might be killing the new baby ones kind of coming through”. Emilie said she takes pride in her eyelashes but knows they may one day fall out again. You can read more about using make-up, tattooing and extensions for eyebrows and eyelashes here.
Annie Y’s eyebrows and eyelashes fell out when lost hair first but regrew. Part of one eyebrow fell out again a few years ago.
Annie Y’s eyebrows and eyelashes fell out when lost hair first but regrew. Part of one eyebrow fell out again a few years ago.
Age at interview: 23
Sex: Female
Age at diagnosis: 3
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Has alopecia ever affected your eyebrows and eyelashes since then?
Yeah, really weirdly, like when I was in sixth form this bit of my eyebrow, from here to here, just fell out for like a year. It's fine cos I like used to draw it on like literally, and like people just do that don’t they now? But it was really weird. I don’t know why that happened and it was like-, sometimes like this, I don’t get very many eyelashes just on the bottom, but no, I haven’t. Apart from that, just that one like tiny bit of eyebrow falling out for a bit. They’ve been fine since which like I'm really like grateful for cos I think that makes quite a big difference to like to not looking like you have alopecia, it's like having them, having eyelashes and eyebrows on your face.
Rosie has make-up techniques to give the impression of having eyelashes and eyebrows.
Rosie has make-up techniques to give the impression of having eyelashes and eyebrows.
Age at interview: 18
Sex: Female
Age at diagnosis: 12
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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.
Not having eyebrows, eyelashes or nose hair (or only having a small amount) could cause discomfort. Danny’s eyes sometimes get red and sore, and his cheeks get sunburnt without the extra protection from having eyebrows. Emma’s nose hair fell out and she finds she often has a runny nose, especially in winter. When Beth didn’t have eyelashes, she found her eyes were sometimes swollen when she woke up in the morning.
Sometimes things get in Rosie’s eyes because she has no eyelashes.
Sometimes things get in Rosie’s eyes because she has no eyelashes.
Age at interview: 18
Sex: Female
Age at diagnosis: 12
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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.
Alopecia and body hair
Some people had lost all or most of their body hair, such as Rosie and Ben. Others had noticed bald patches on particular parts of their body. Krista’s arm hair fell out and although it’s now growing back, it’s in uneven patches and she finds it easier to shave. Becky says she’s naturally dark haired so would be able to see if she had hair loss on her arms. Emilie finds she doesn’t have much hair on her arms or legs and gets a lot of ingrown hairs. She has some scarring where she has tried to remove the ingrowth hairs and feels embarrassed about people seeing it. Arti thinks she might have some “slight patches” of hair loss on her arms, though she’s not sure if it’s related to alopecia or has always been like that.
Ben talks about alopecia affecting nearly all of the hair on his body.
Ben talks about alopecia affecting nearly all of the hair on his body.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I’ve got total hair loss everywhere apart from my armpits [laughs]. And a little hair on my arms and a little like tiny patches on my knees or something. But, you know, nothing major anywhere else, no.
How did that hair loss on the rest of your body start or develop?
I think it was kind of around the same time my scalp hair kinda accelerated, I started to lose body hair and I didn’t really care to be honest. It’s body hair [laughs]. The main concern was up there [points to scalp]. So everything else was just, you know, I don’t really mind. I mean because of-, because I was fairly young when I started having it anyway, I didn’t really have any beard anyway. So who knows I could have a proper beard by now if it wasn’t for alopecia [laughs]. But I don’t really miss anything like that and it doesn’t bother me. I like it. I don’t think that’s major, not at all.
Emilie was shocked when she read online that pulling her hairs out when she’s stressed could be a form of self-harm, as it’s not how she thought about it.
Emilie was shocked when she read online that pulling her hairs out when she’s stressed could be a form of self-harm, as it’s not how she thought about it.
Age at interview: 18
Sex: Female
Age at diagnosis: 4
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Is the scarring on your legs, did you say that’s from trying to get the ingrowing hairs out?
[Nods]
Could I ask a bit about that?
Yeah, it’s, it’s become a habit and I actually tend to do it when I’m stressed and I actually kind of, I know a lot of people do this try and self-assess themselves on the computer but there was something kind of shocked me and scared me and kind of not stopped me from doing it completely but prevented me. When I, I do it when I’m stressed, you know, I really dig at my skin and I, you know, I get a pair of tweezers and I try ripping these hairs out and I notice that I get lots of scabs and I get very upset over it and then I think ‘why is it like this?’ and then I’ll get upset and then I start picking again, you know, trying to get rid of the scab and pulling off the scabs.
Lots of people talked about gendered expectations and body hair. They often felt that women were expected to have long hair on their scalp but be hair-free on their legs and armpits. Because of this, some young women were pleased their alopecia affected their legs and armpits because it meant they didn’t have to shave or wax as much. Emily found it interesting that there are social norms about the ‘right’ places for hair to be visible on women’s bodies.
Emilie’s alopecia affects her pubic hair and she prefers to shave the area.
Emilie’s alopecia affects her pubic hair and she prefers to shave the area.
Age at interview: 18
Sex: Female
Age at diagnosis: 4
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When it comes to pubic hair – patchy, really patchy. I don’t- because it’s patchy I just get rid of it all, I just get rid of it all cos it’s otherwise a nuisance. It’s very strange, I think it’s more kind of active down below basically, especially on the front, the front view. It’s, it just, I keep getting patches and then I won’t notice cos I just get it all off, I just shave it all off because it’s just such a faff but then I’ll realise that the patch has moved and the hair’s grown back in other places and not just small patches, it’s one big patch and another, you know, patch come out as well. I’m used to that, that’s fine, I just get rid of it all I feel more comfortable without it there, you know, like I said if my hair grew back I’d shave it off cos I’m uncomfortable with it, so I’m more comfortable with it not being there at all.
Nails
Although not an area associated with growing hair, fingernails and toenails were mentioned. Emma has heard that alopecia can affect the nail, but hasn’t had this happen to her. Laurel says her nails are damaged which she thinks is due to alopecia.
Laurel thinks alopecia is the reason why hers nails became dented and stopped growing.
Laurel thinks alopecia is the reason why hers nails became dented and stopped growing.
Age at interview: 17
Sex: Female
Age at diagnosis: 15
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You won’t be able to see this on the camera but it makes funny dimples in your nails. Have you ever had your nails done by a, like acrylic nails?
No.
Cos that would have been a good example of explaining it but it makes it look like you’ve got-. My nails get eaten out. I’m trying just to describe it. It’s quite hard to describe. The nail bed kinda just eats away at them. And then you can pick it and it gets sore. Then like I don’t have-. Oh I think my pinky nail was only on like half because it used to just kind of fall off cos I pick-. Actually I shouldn’t have picked it but I picked it quite a lot and it was really quite scabby and they’re pink but now they’re all really dimply and really thin and they don’t grow.
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