There are different types of alopecia varying in terms of causes, severity (how much hair falls out), patterns of hair loss, the usual age it starts and body parts affected. Most of the people we talked to had alopecia areata, which is often used as an umbrella name for a spectrum (a range) of types: areata, totalis and universalis. Because alopecia areata is a spectrum, many people had hair loss ‘in between’ these named points. Some people found that their alopecia changed along the spectrum over time.
Professor Moss talks about the types of alopecia.
Professor Moss talks about the types of alopecia.
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Alopecia means baldness. And there are lots of different types, of different causes. When most people talk about alopecia, they mean alopecia areata, which is the patchy type of baldness which occurs in young people, but there are other types. For instance ordinary-, the sort of baldness that men get, male pattern alopecia. Or if people put their hair too tight, they can sometimes get alopecia hair loss round the edges, that's called traction alopecia. So, what we're talking about is alopecia areata. And if it's just patchy, that's what we call it. If it affects the whole of the scalp, we call it alopecia totalis. And if it affects all the body hair, over the whole body - including pubic hair, arm hair, beard hair, eyelashes, eyebrows - then that's alopecia universalis. And sometimes it can be in between. So alopecia areata, you can get the odd patch in the eyebrow or, or beard hair.
Could you tell me how common the different types of alopecia are?
Alopecia areata affects probably about one in a thousand people, one to two in a thousand people. So actually relatively common. It's much rarer, I couldn't give you a figure for totalis and universalis, but I would say that of all people with alopecia areata, a very small proportion, probably less than five percent, have totalis. And probably only one percent of those have universalis.
Emma researched about different types of alopecia as well as causes and treatments.
Emma researched about different types of alopecia as well as causes and treatments.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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Cos like there’s three different types of alopecia. You’ve got like the areata, which is like what I had initially, which is like a small patch. And then I think it’s totalis, which is like all of your head I think, your facial hair and whatnot. And then it’s like universalis, which is I think what I’ve got now, which is like you lose everything. Which is great like there [gestures to body] but not so great there [gestures to head]. And it sometimes can affect your nails apparently. But I’ve never had any problem with my nails at all. So, yeah, I did start to look up about just the definitions and different types and the causes. Which, the causes, it just sort of said stress. Which I was like, well, I don’t really believe that. And there was other causes as well. You know, sort of with autoimmune, I think triggers were stress. And I just, I don’t think that my trigger was stress. And then like I was just looking at different treatment options. And there was like, I think there was, there is quite a lot, but I think by my point when I’ve got no hair like and not a lot of them applied to me. And I think, as I’ve said, like a lot of them took a lot of effort and there were, it’s quite sort of tiring stuff to do.
Beth started off with bald patches and then total hair loss on her head. Although she now has eyelashes regrown, she’s also noticed patches of leg hair missing.
Beth started off with bald patches and then total hair loss on her head. Although she now has eyelashes regrown, she’s also noticed patches of leg hair missing.
Age at interview: 24
Sex: Female
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I didn't fit into any of like-. So you've got categories for alopecia. Mine changed, all the way through. So I didn't really fit into the category, I was like 'well I'm probably more that, than that.' But then I lost it all, so I was like, 'okay well I'm that now.' And like even if you asked me now, I wouldn't be able to- I know there's like alopecia totalis, I wouldn't be able to tell you the others. Yeah. I don't know whether that's just cos it's like I haven't looked at it, because I don't want to or I don't really know. I rarely- I rarely researched it, to be honest. If I did, it would be because I was in a really good place about it, and it would be like 'okay well I'll just see what's out there’.
For this project, we didn’t talk to anyone whose alopecia was caused by chemotherapy (cancer treatment). No one described themselves as having androgenetic alopecia (male- and female- pattern balding), which is usually thought of as affecting middle-aged people but not always, or telogen effluvium (general thinning of hair). None of the people we talked to identified themselves as having the subtype of scarring alopecia (when the hair follicles are damaged beyond repair, usually due to another underlying illness). A couple of people initially thought pulling their hair too tightly when styling it had caused their hair to fall out, which is known as traction alopecia. Hannah worried she had pulled her hair out straightening and brushing it “too much” but, “looking back on it, the kind of patterning of it and where they were… They weren’t just kind of like traction alopecia or anything”.
Rochelle’s had patches of hair fall out, including around her hairline. Some people have suggested it is traction alopecia but she’s unsure.
Rochelle’s had patches of hair fall out, including around her hairline. Some people have suggested it is traction alopecia but she’s unsure.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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God knows if it is alopecia or just a general hair loss but I think it is, I don’t know. Cos the thing is since I was 14, the big bald patches haven’t come back which is weird it’s just slight, oh you’ll see a little hair there or you'd see a little patch there, but it’s never been as bad as it was when I was 14. Maybe cos I let it get to that state before I started to use any products on it but I’m not sure.
So right now because I’ve got a wig on it’s not going to, nothing is pulling on my hair so I know it will grow back. Whereas what I tend to do is when I see the hair growing back and it’s looking nice, I then put actual weaves back in my hair so a stitch and that’s when it pulls again and then that’s when alopecia comes back. So I think what I’m going to do now is start to wear wigs more often and then just leave my hair out natural because I’ve still got a lot of hair and that’s about it. But not putting no more sewn in weaves into my hair because it pulls a lot on my hair, even though when I did start to get alopecia I did use sewn in weaves and it grew it back.
Professor Moss says alopecia areata does not cause scarring.
Professor Moss says alopecia areata does not cause scarring.
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Alopecia areata does not scar. Scarring alopecia refers to types of alopecia which are due to inflammation in the skin of the scalp. So, for instance, there's a condition called lupus which can cause alopecia hair loss which has a scarring process and that doesn't recover. Usually-. Because the scar damages the hair follicles to the extent that they can't recover. But alopecia areata is not a scarring process. The follicles are still there, but they may be very, very small. They've been attacked by the body's immune system but they are still there and there is still the potential to recover. The, there isn't a scarring process that completely damages the hair follicles so that they can't recover.
Alopecia areata is a spectrum (a range or scale) which is sometimes divided into particular subtypes based on the amount of hair loss and body locations affected:
- Alopecia areata – this was mentioned by a lot of people. It involves patches of hair loss rather than entire areas (e.g. the scalp) being bald. These patches can be anywhere on the body, including the scalp, eye brows, eye lashes, legs and pubic hair. For the people we talked to, it was usually the scalp. Hannah’s diagnosis is of alopecia areata and her scalp has been mostly affected, but she’s also noticed some patches of hair missing on her legs.
- Alopecia totalis – this is when a person loses most or all of the hair on their head (scalp, eyebrows, eyelashes, facial hair), as for Annie Y and Emilie. Lots of people thought that full baldness on the head tended to be misunderstood by others as being due to chemotherapy. Meghan says the thought of her alopecia areata becoming totalis or universalis “scares” her but that she knows it’s a possibility.
- Alopecia universalis – this refers to little to no hair growing anywhere on the body, including the head, arms, legs and pubic area. Danny was born without hair and, although he grew some eyelashes and eyebrows as a toddler, he hasn’t got much hair anywhere else. Ben shaved his head when he had lost about half of his head hair and was continuing to lose more. He had some stubble grow initially but it “gradually disappeared” as has the hair on other parts of his body.
Some people knew which of these types their hair loss was closest to because doctors had told them or they had learnt about it online, others referred to themselves as having alopecia or alopecia areata in general terms.
Hannah says it’s important to think about how quickly alopecia happens for different people as well as how much hair falls out.
Hannah says it’s important to think about how quickly alopecia happens for different people as well as how much hair falls out.
Age at interview: 21
Sex: Female
Age at diagnosis: 16
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I think a big thing that’s missed out on is how rapid or how different alopecia can be, so it can vary. So some people can have like their hair go in two weeks and other people will be losing their hair over a matter of months and, or like years, and so that really varies and has in a-, it’s interesting to see the different effects, cos it can have the same effect on a person that’s lost it in like three weeks to a person that has lost it over a matter of years, but then, struggling with it for years can sometimes be tougher and also it makes it less likely to grow back as well, like your chances of your hair growing back depending on how much you’ve lost, go down. So I know that they say, I think it’s after the first year of alopecia if it’s under, if it’s over a certain amount of hair gone and without like good regrowth then you’ve kind of gone from a 70% chance or something down to like a 20% chance of it regrowing. But then it’s all just numbers and guessing because, you know, people with alopecia universalis, they say, you know, they’re less likely to grow their hair back and I know of someone that had all their hair grow back, no treatment, just grew back out of nowhere and that was after 10 years, which is really weird because you don’t know, you just, I think it’s possibly because it’s your immune system and it could maybe be a different stage.
Kayla’s unsure if her alopecia type is changing to alopecia totalis.
Kayla’s unsure if her alopecia type is changing to alopecia totalis.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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Basically, it’s all off my head now, which is really weird because areata is normally not. But- and I’m starting to lose my eyebrows but with that you can-, that can happen even with areata, that you can like start to lose everything but I don’t if that’s like changing into the full one or if it’s patchy, I don’t know. But yeah, now I’ve got tattooed on eyebrows.
Rosie has alopecia universalis (hair loss on their whole scalp and body) and can have two free NHS wigs each year.
Rosie has alopecia universalis (hair loss on their whole scalp and body) and can have two free NHS wigs each year.
Age at interview: 18
Sex: Female
Age at diagnosis: 12
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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].
The type of alopecia and extent of hair loss was important to some people because of:
- Wigs – some people had seen dermatologists who were reluctant to prescribe them a wig on the NHS (for which there is financial support), especially if their hair loss was considered quite ‘mild’. Those with small patches of hair loss and who had a lot of hair still said it could be tricky to get the wig to fit and sit ‘right’.
- Treatment options – for example, some had been told by their doctors that their hair loss was too much for them to have steroid injections or, as for Michael and his eyebrows, that only individual parts were small enough to try treatment.
- For explanations – having a label of ‘alopecia’ generally or a subtype helped some explain their condition to other people. As Emily said, words like ‘hair loss’ “are generally applied to like male pattern baldness, and don’t really explain the severity of what I have”.
- Likelihood of regrowth – many had been told by their doctors that a small patch of alopecia areata was likely to regrow. This was the case for some, but others found their alopecia continued and/or became more extensive. More extensive hair loss which continued for a long time was seen as less likely to regrow.
Emily says her alopecia is considered extensive enough that she gets some financial help with buying wigs.
Emily says her alopecia is considered extensive enough that she gets some financial help with buying wigs.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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And are all of those wigs ones that you’ve found yourself or are they sort of NHS supported?
They are all ones that I’ve found myself. But I do have one that I got VAT relief on, it was like a proper one with like a parting and stuff. So I got VAT relief on that so it’s supported by the government. But yeah it was, it was to know that you, it sounds awful, it’s nice to know that it’s bad enough, your hair loss is bad enough that you qualify for something like that because with, I am probably felt just as self-conscious with the tiny little patch on the side of my head as I do now. But then I wouldn’t have been able to get a wig at that point and it sounds silly, but it’s good to know that my hair loss is bad enough that I can get that kind of support. So it’s nice to have, it’s nice to know first of all that it’s clearly common enough that there is something there in place to help people. And also to know that I can as a student buy a wig that is clearly quite expensive and get some kind of help with that. So yeah it’s, it’s, it’s good to know that that’s there but I’ve never really looked into getting an NHS wig because they tend to be quite expensive anyway and I think for the quality that you get, the one that I have, it’s like perfect for me and I’ll probably stick with that around for like until my hair possibly grows back. So yeah just to have the kind of VAT relief on that is really helpful.
Grace had steroid injections for her patches. Her doctor stopped these when the size of the bald areas continued to increase.
Grace had steroid injections for her patches. Her doctor stopped these when the size of the bald areas continued to increase.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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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.”
Emily looked online about alopecia areata after being diagnosed. She found the information about regrowth “reassuring”.
Emily looked online about alopecia areata after being diagnosed. She found the information about regrowth “reassuring”.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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I mean on that day, I did Google it and it was-, I think it was quite reassuring. It was like I think 3% of people who have a patch go onto lose all their hair. And of that 3%, like 2% lose all of their body hair. So I was like ‘well, I’m probably fine then. Like I guess it’s probably okay’. But it took me a while to get to find that information. A lot of the information was like women who’d had hair extensions and their hair had come out. And I was like ‘I don’t have hair extensions. Why is my hair coming out?’ So yeah, I was more worried by the lack of information than any information that was actually out there. But once I’d kind of read about it, I was slightly reassured by the fact that it’s quite common but then to get it to an extent that I was worried about it, it was very uncommon.
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