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Alopecia (young people)

Alopecia areata triggers

Most people we talked to had alopecia areata which is an autoimmune condition (see also about causes). They had lots of different experiences and ideas about what might have triggered it to start or become more severe. As Rosie said, “No-one’s trigger is exactly the same and some people never even find out what theirs is”.
 

Professor Moss talks about possible triggers of alopecia areata.

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Sex: Female
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Triggers for alopecia are uncertain. So people can have the genetic tendency, and never get it. Or they might get it and it goes away. Or they might get it in childhood, and not again. Or they might get it in adulthood. And so presumably there is some trigger in the environment, or that affects you externally, quite apart from that genetic tendency. And we're very ignorant about those. Now most people with alopecia are fairly certain that stress is a trigger, and I think it probably is. I don't know how that works, but it does seem that people associate the onset of their alopecia with some stressful life event. Sometimes a physical stress like an illness, but more often an emotional stress, or a shock, or a bereavement, or something like that. It's very hard to test that, because of course there is that natural tendency to link things together and assume that it's cause and effect. So if something horrible has happened and then you get alopecia, of course you naturally think that that's the cause of it, and we can't be certain. But it's, it's mentioned sufficiently often that I think it probably is a real phenomenon, that stress can bring on alopecia in a susceptible individual. But we don't know of any other specific causes.
Some of the things mentioned were:
  • stress
This might be ‘general’ stress but could also be from particular things such as: bullying, exams and studies, family breakdown, worries about family members (e.g. who are ill), moving home, bereavements, being a victim of a crime (such as a burglary), money worries, difficult times at work, pressures on childcare and household tasks. Meghan finds there’s often a lag of about a month between when she goes through a stressful time (such as with her studies) and when her hair falls out.
 

Rosie’s worked out that a key alopecia trigger for her is exam stress.

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Age at interview: 18
Sex: Female
Age at diagnosis: 12
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At first we had absolutely no idea what might have triggered. I had quite a few sort of bad experiences towards the end of my first year of secondary school, I had one of my relatives pass away, I had a massive falling out with one of my closest friends. And then, of course, the lot of exams that I just was not anticipating at all. So we didn’t know. It was a limbo between ‘oh, could it have been that, could it have been that.’ And then, throughout the years we mapped out, using my weekly appointments, you know, when I had hair growth and when I started losing it as well. And I had quite a few periods of sort of oh it’s, you know, it’s growing back and then suddenly ooh, losing. And when we mapped them out, when looking back, my dermatologist said, “Oh, you know, it was summer of 2009 and then it was like January 2012.” And I sort of watched it and I thought ‘well that’s when I had Year 7 exams. That’s when I had GCSE mocks. That’s when I had a couple of GCSEs. That’s when I had the rest of them; and it very quickly formed a pattern of ‘oh look, that’s an exam. Oh look, there’s another one.’ So it very quickly sort of formed of, I have a bunch of exams and then in a month immediately after was a pattern of loss. And then it would gradually work its way back to sort of halting loss and then growing again, which was quite interesting, cos obviously then we’d sort of figured ‘oh no, my specific trigger is exam stress’. 
 

Ben thinks his experience of bereavement and grieving played a part in his hair loss. He saw a counsellor at the hospice after his nan died and was also able to talk about his alopecia.

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Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I talked to my mum quite a lot about it and we thought it could be to do with the-, the doctor kinda agreed, it might be to do with like suppressed feel-, like feelings. I lost my nan when I was quite young and I was really close to her. She was almost like a second mum. And I didn’t really grieve properly if that makes sense. I kinda bottled it up. I didn’t really cry much and my mum kinda realised how serious it was when she asked me about that time and I couldn’t- I didn’t have any recollection of the funeral or anything around that time, I kinda just blanked it out. So I went to see a counsellor when I was losing my hair as well through the hospice where I lost my nan through because it was related to her. And I feel like that really helped with my experience as well, talking to someone. I talked to them maybe once a week for a couple of months, maybe not that much, not even that much. But I just felt like talking about my hair loss and things like that-, I talked mostly about hair loss and a little bit about grief. But I really felt like that kinda helped me work out who, you know, who I was inside I guess, I don’t know. You know, I think that’s what kind of contributed to my personality shift maybe is the fact that it’s not important and, you know, I talked about all sorts of things, all about my whole life but like, you know.

I just-, it kinda made me feel better as well if you put it down to that. But I still have no idea what caused my hair loss like I, I feel comfortable about that. I, you know, it’s not like you talk about that, you feel better, your hair grows back. It’s not that easy. So I have no clue.
 

Annie X talks about being ill and stressed as triggers for her alopecia.

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Age at interview: 15
Sex: Female
Age at diagnosis: 11
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So, what my parents think it was, I was really ill at the end of Year Six. So it happened in the October of Year Seven. So in the summer of Year Six, I was really ill. And I was having panic attacks and I was having weeks off school at a time, just because I felt ill and stressed. And then, over the summer, my grandpa got cancer. But it wasn’t very serious cancer, but I didn't know that and no-one was telling me what was happening, so I thought he was going to die and I’m really, really close to my grandparents so that was an added stress. And then, also, obviously, I was moving schools to a place which was, cos I went to a mixed primary school. And I was going to a private single sex school, so it was a really, really big change. And I was really worried about it. So, yeah, I think it was stress and worry. I know for a fact it gets worse when I am more stressed. So I, that’s another thing I have to monitor. I have to monitor the amount of stress I’m under so I try and not get myself into stressful situations, like if there’s drama at school, I try and stay out of it just so I don’t put myself under unneeded stress. 

And have you found that when your alopecia has sort of changed, when different patches have appeared, can you sort of pinpoint certain events that have happened for you at that time?

Not really. Sometimes, I remember I got into a really bad argument in Year Eight and that, that triggered another patch. But I think it was just, I really don’t know, but I think it was just all that stress sort of got so, it built up and built up and built up that my body or immune system sort of twisted it to attack itself, because I was bottling up all the stress. Because I’m not, I am really not very good at talking to people. And I’ve gotten better and better over time. But I’ve, like, I couldn't ever talk to even people like my parents. So, I bottled stuff up and I think that just got twisted. And alopecia was a response to that. 
Others disagreed that stress had triggered their alopecia areata. Arti finds it frustrating that her doctors keep saying she has alopecia because of stress as she feels that alopecia is the source of stress in her life rather than a result of it. Emma thinks it can be patronising for doctors to insist stress is the reason for alopecia even when the person with it says it’s not. Many people said that even if stress had been a trigger initially, it isn’t the reason why they have continued to have alopecia. Grace does yoga to relieve stress but adds that it isn’t the “root of the problem”.
 

Annie Y doesn’t know what triggered her alopecia when she was age 3.

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Age at interview: 23
Sex: Female
Age at diagnosis: 3
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What have been your main sources of information about what alopecia is?

I guess my parents. So, what they were told at the time. I think they definitely felt that there wasn’t very much research into it, and I know that they, it was like a really horrible time for them because obviously they're really sad that it happened, but one of the things that they got asked was like what their marriage was like because they were worried, the doctors were like, "Is this child really stressed? Is that why all her hair's fallen out?" Obviously like their marriage was fine and I think that was really like tough for them. 

But yeah, so I just know what they knew at the time, and then maybe I've like Googled it at some point but not really; like I've never taken the time to like look it up really.

So with the doctors thinking that stress may have been a factor, is that them trying to work out what could have started, triggered alopecia-?

Yeah but I think, I don’t think, I mean I don’t think you can be stressed when you're three, I just think… And I can't have been stressed my whole life since as well so I really don’t think that’s what it is. But I think that’s just like one of the reasons that it does happen to some people, so.

Mm, yeah. Do you know why there could have been a trigger for you or is it just completely unknown?

Completely unknown, yeah, from what I'm aware.
 
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Imogen wrote an article online about her experience of stress triggering her alopecia. She was upset by the response of other people with alopecia who disagreed with her.

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Age at interview: 17
Sex: Female
Age at diagnosis: 7
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In one of the questions, I think it said, “What is alopecia?” Then I replied something like, “Alopecia is an autoimmune disease caused by stress.” And obviously that isn’t-, that was something that a lot of people didn’t like. So that caused a lot of arguments but, to be honest, that’s my opinion.

For me, my alopecia was caused by stress. But other people argue, that have alopecia, that it’s not caused by stress because you know they’re not a negative person and, or whatever. My personal opinion of it is that alopecia is caused by stress but other people obviously don’t wanna accept that even though that’s what the doctors are telling them.
 
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Becky says her alopecia is triggered by stress, but that hair loss is also a source of worry.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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See they said, with alopecia areata, they say they don’t really know. But they say that it can be quite stress induced. So I tend to find that mine’s fell out a lot around exams. Around times when I’ve been a little bit unsure about things, so unsure about jobs, starting new jobs where I’ve been a bit stressy. It’s when you’re down as well. When you feel down about things, but obviously that links to stress. If you feel down because you’re not sure about a job or a new job or you’re not sure about how your exams are gonna go or you’re waiting for results. So my patches tend to come when I’m down about things or stressed about things but in myself I never feel-, I’m not a depressive person and I’m not a stressy person. So in myself I never feel it, but it’s like it’s my body’s way of showing that I am stressed or I am down about something. But if you say to me, “Do you feel stressed?” I’ll say, “[hm] A bit, but not really.” But it’s like my hair is, is saying, “No, everything’s terrible, I’m really, really stressed,” and that’s when it comes out. But, I personally never feel agitated or-. And I think sometimes patch, a, a patch becomes patches, because your subconsciously worrying that your hair’s falling out. 

A cycle?

So, yeah, it’s a vicious cycle. Yeah, because you’ll see one – like this one that I’ve got at the moment, obviously that’s at the side of my head. So I see that and I think ‘oh my God, if that gets any bigger’ or ‘oh my God, is that gonna go on the top of my head?’ Whereas I will never say those words, that is what I’m probably subconsciously thinking and a lot of the time you’ll put your hair up and you’ll think ‘oh God that looks awful. I’ve got this massive patch on side of me head, everybody’s gonna notice.’ And that then turns into another patch, because of how you’re feeling about it. So I think your triggers are stress, worry, just being generally not feeling yourself and your alopecia itself. I think that contributes as well. 
  • hormones
Emily and Krista both think changing or occasionally missing contraceptive pills may have been a factor in their hair loss. Krista also stopped taking antidepressants because of side effects and she thinks coming off a high dose could have upset the balance of her hormones. Beth’s dad thinks her hair might regrow with the hormonal changes if she becomes pregnant in the future.
 

Emily thinks changing contraceptive pills might have been a trigger for her alopecia.

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Age at interview: 20
Sex: Female
Age at diagnosis: 19
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But for me I think it was because I changed contraceptive pill which I’ve done a little bit of like asking people and stuff, and a lot of people have found that when they’ve changed contraception method they’ve like they, their hair has started falling out, and it’s triggered something. So that’s something that I find quite interesting and also really annoying ‘cos I’m like, “Why did I change?” But obviously, I mean there’s no way of knowing ‘cos it could have happened anyway, it could have happened like in 10 years it could have happened 10 years ago. So I do think, I mean there’s definitely a kind of biological predisposition to it, because looking at my family history we have so many, we have like all of the autoimmune diseases that you could possibly have, and then to, I think I probably inherited that and then just it needed something to trigger it, to set it off which I think was like the hormonal change from changing my contraceptive pill. But I’m not, I mean again I’m not sure. And I kind of don’t want to think it was that because that would just annoy me to think that like I could have avoided that, which yeah, a lot of people have said that, that’s something that they believe was a trigger for them as well. But then a lot of people think it was stress. And it’s just so difficult to know because it could have happened at any point, it could be a complete coincidence.
 

Krista thinks her alopecia may have been triggered by missing contraceptive pills and coming off anti-depressants.

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Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I’m on the pill, I use Celeste I started taking that properly every day after the first time I went to the doctor so from sort of April I started taking it every single day. And I suppose even that sort of, she said to see any kind of change in your hormones that will take three months and two to three months later my hair was growing back. So I do, I think hormones are probably a big part to play in it. But then once my hair started growing back then it went through my mind as, well it didn’t have to happen maybe I could have stopped it from happening if I’d have stopped taking the anti-suppressants properly or took my pill properly and it might not have ever happened to me. So then I started blaming myself so that was hard as well, getting me through that. And even now I still, I still blame myself and I, I will still look back and think it was my fault I got so stressed and took all, didn’t take these tablets I was supposed to be taking properly so they weren’t, even now I’d say I probably do still blame myself for it happening.
  • illness or another condition
Doctors sometimes ran tests to check if the hair loss was being caused by another condition. Emily and Emma were both prescribed iron tablets when their blood results showed they had low iron levels, but their alopecia continued. Hannah has seizures which are also triggered by stress and finds her alopecia tends to be more severe when she has more fits. Some people thought medications they took for other conditions might have been triggers for their alopecia.
 

Arti’s been to her GP about feeling physically weaker and achy, but she’s not sure if this is linked to her alopecia.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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Since I’ve been losing my hair, I’ve also, there’ve just been points where I feel like really weak and I get really achy arms and stuff. So I’ve been to the doctor and sort of asked them about that and they said it’s nothing to worry about. Yeah, I think I just have really bad luck with my GPs [laugh]. But I’ve, I get an impression that I have other things that are coming alongside when I have quite a bit of hair loss. So I think there might be something else connected with it but I’ve not really got any help with that yet. So it’s all just been achy points, feeling really weak, sort of fatigue. But yeah I’ve not got any help with it. Yeah.

Have any of the doctors done any like blood tests or anything like that?

Yep the doctors. Yes, when I told them about the achy joints and stuff – they ran some tests of like, I can’t remember, it was some tests to see if your muscles are inflamed or something. And all the, I think they ran about 4 or 5 tests and everything came back negative and they said, “It’s probably fine. It will probably go away”. I don’t do much exercise either which they said like, I did tell them I don’t do much exercise but they said like, “It might be like an exercise sort of like, might just pull something,” or whatever. But I don’t do much exercise. I didn’t do any exercise when it sort of came about and also thought I might have slept on it funny but sleeping on it funny – I mean I had, I’ve sometimes had the aches for like a week and a half, two weeks. It doesn’t feel like, it probably should have gone away if I just slept on it funny. So yeah it’s a bit odd.
 
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Grace developed alopecia after having pneumonia as a child which she thinks “shocked her system”.

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Age at interview: 18
Sex: Female
Age at diagnosis: 10
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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. 
 

Arti thinks changing her medication for an underactive thyroid might have been a factor for her alopecia.

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Age at interview: 22
Sex: Female
Age at diagnosis: 22
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So I have the underactive one. So I just have medicines every day to sort of control it which, yeah. So I just have medicines to control it and apparently people who have thyroid problems are more likely to have problems with alopecia. I don’t know if there’s too much research gone into it but, but there have been sort of correlations between those. Yeah I did ask my doctor about the medication I was having cos I thought that maybe that might be something that was triggering the alopecia. But they, they did actually switch me for a bit to a different one and it was actually causing more problems with my, my thyroid sort of-, because when they did a blood test they said that, “This isn’t really working for you any more.” So they sort of switched me back to the medicine I was having before. But in the time that I did change my medication it didn’t seem like there was that much difference so it was probably about two, two months ish. So yeah there didn’t seem to be much difference with alopecia. My alopecia was, so my hair was just falling out pretty much the same speed that it was falling out before. So, I don’t think it’s medication but then apparently there might be some links which I’m not really aware of, like in detail what they are but.

Was the underactive thyroid diagnosed before you had alopecia? Yeah?

Yep. So it was diagnosed [hmm] I think like September 2013 or something, so quite a while back. Yeah, so it sort of took me sort of a year to sort of control it almost cos it was always like over-medicated or under-medicated. And so it took me a while to sort of get there which was when my sort of alopecia started coming about which was why I sort of asked the doctor about my medication, whether that was having an effect with the alopecia which is when they tried adjusting it.
There were some other possible factors mentioned by some, such as: A few people wondered if this could have played a role in triggering their alopecia. Others were sceptical and thought “blaming” diet was unfair. Emily eats mostly vegetarian food and although she took iron tablets when her blood tests showed low iron levels, her alopecia continued. Lots of people thought that an unhealthy diet wasn’t necessarily a trigger for alopecia, but that “eating well” could help regrowth. Ben stopped eating gluten after a test showed he was intolerant and although his alopecia continued, he says he looks and feels healthier than before.
  • seasons
Annie X says her hair tends to fall out in February but quickly regrows between March and June. Emilie found her scalp grew “peach fuzz” in the summer months. Emma’s noticed a pattern in which her hair falls out in October.
  • hair styling and products
Some people thought things like hair dye, perming or putting weaves into the hair had played a role for them, but others disagreed. There is an alopecia subtype called traction alopecia where the hair is pulled tightly (e.g. with hairstyling), but this wasn’t relevant for most of the people we talked to as they had alopecia areata (an autoimmune condition).
 

It was frustrating when a hairdresser kept assuming Elizabeth’s hair loss was due to her wearing extensions.

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Age at interview: 20
Sex: Female
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I remember going to a hairdressing salon like college salon so they were trainee hairdressers and it was probably the worst experience that I had with hairdressers. And basically I was having my hair cut by someone who was learning hairdressing. And then their tutor came up and was like, “Do you have alopecia?” “Yes,” and then I said, “Yeah, oh, I’ve had it since I was two.” But then they asked silly questions like, “Arr, have you had extensions?” “I just told you I’ve had it since I was two,” and but I was just like, “No.” And then I said to my sister like once I’d left, “Why did she ask me all those questions?” cos I think I was about 12 at the time and I wasn’t necessarily a girly girl so I didn’t really care about extensions or anything. And she was like, “Because extensions can make your hair fall out,” and I was like, “I told her that I’d had it since I was two, it’s not gonna-.”
 
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Becky worried about hair falling out from styling it, even though she knew the causes for her alopecia areata were different.

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Age at interview: 23
Sex: Female
Age at diagnosis: 14
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I was told by my dermatologist, I think this was when I was doing all my tests and everything. And I was told kind of just to be careful with it, so not to blow dry it or straighten it too much or pull it back too much. And I don’t think, I don’t think any of those things contribute to it, which they don’t because it’s something that your hair’s kind of got on, well your blood cells, your hair’s got a mind of its own and it falls out where it wants, when it wants, however much of it wants. But you desperately try to stop it – so even though dyeing it, straightening it, blow drying it, pulling it back, putting clips in it, even though it might not contribute to it falling out, in your head that’s another thing that might make it fall out. So you stop doing that because you, you just desperately don’t want it to fall out. But a lot of people always say as well, because your hair falls out, “Well, why ya scraping it back? It can’t be any good for it scraping it back.” And that kinda gets ingrained in your head then, so you don’t wanna pull it too much. And I always get really scared as well that I’m gonna pull a bobble really tight and comb it to make it really flat and a load of hairs just gonna come out in a comb. That’s one of my scares. So that’s why I don’t do it as much now as well. 
There was a lot of uncertainty about triggers and it was a very emotional topic. Sometimes people felt it was their “fault” that they had alopecia, which was very difficult to cope with. Other people had sometimes made comments which implied blame that they had done something ‘wrong’ or that there was something ‘wrong’ with them. Imogen’s heard nasty comments that she must be very ill and unhealthy because her hair has fallen out. Emilie finds it annoying when people tell her “don’t stress” because “there’s bound to be things that are gonna stress you”.
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