Lots of people had wondered ‘why do I have alopecia?’ Most people we talked to weren’t born with alopecia. Instead, they had lived part of their life having and growing hair, which then started to fall out. An exception is Danny who was born without hair and hasn’t grown much of it since. His mum was told his alopecia was due to “immature hair follicles” and he hasn’t been back to see doctors about it since he was a toddler.
Most people we talked to had alopecia areata, totalis or universalis. For them, the answers as to why they had alopecia were not clear and this could be hard to hear from doctors. Sometimes doctors had talked about causes (what is happening to make the hair falling out or not grow) and triggers (why did the hair loss start or get worse). Lots of people felt there wasn’t enough research into alopecia areata happening, but were hopeful for more understanding about the causes and triggers as well as for treatments in the future.
Professor Moss explains about the causes of alopecia areata as an autoimmune condition.
Professor Moss explains about the causes of alopecia areata as an autoimmune condition.
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So if we focus on alopecia areata, totalis, universalis, that group of conditions. They're what we call autoimmune. That means the body's immune system attacks the hair follicles and causes the problem. And the body's immune system of course is designed to attack germs bacteria, viruses, things like that. But in this situation, the body's immune system is overactive and attacking self. And we don't know exactly why that happens, but we do know that there's a genetic tendency. So it tends to run in families. So people who've got alopecia areata may have a family member who's also got it. Doesn't always happen, but that can be the case. And there are other autoimmune conditions which can occur in the same family. So if there's that tendency for the body's immune system to attack self, then it can attack other organs as well as hair follicles. So it can attack the thyroid gland, and give thyroid disease. It can attack the cells that produce insulin, and cause diabetes. And it can cause one or two other things. And so that group of conditions we call the autoimmune disorders. And if a family has the genetic tendency to those, then different disorders may pop up in different members of the family. So, somebody may have alopecia, somebody may have thyroid problems, and so on. It doesn't mean that somebody who's got alopecia is gonna get those other problems.
Sometimes we test for them, if there's a suggestion. So if someone with alopecia is totally healthy, leading a normal life, then we wouldn't do any tests. But if there's a suggestion that they might have some other medical problems, such as diabetes or thyroid problems, then we would test. We would look for the antibodies, and test. We don't routinely test for antibodies, because actually quite a lot of people have the antibodies and they’re not causing a problem. And in some ways it's better not to know, because they're there but they're not causing a problem. But that's the basic cause of alopecia.
Kayla says there’s a lot of uncertainty about alopecia causes and triggers.
Kayla says there’s a lot of uncertainty about alopecia causes and triggers.
Age at interview: 20
Sex: Female
Age at diagnosis: 4
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I mean the thing is with it is there’s so many different theories and it’s kind of like it could be any of them. I mean a lot, a lot of people say it’s hereditary but triggered by stress and like all these things and I guess you can say, “Oh well, this time was stressful.” But I guess you can say that about anything. So I don’t know. I mean I guess I kind of had a stressful childhood with like my parents breaking up and things like that young and stuff but, at the time, I can’t really imagine me knowing, so I don’t really understand. Like I mean, obviously, it was stressful but I was four so I can’t have known that much, so I don’t know. It’s kind of like you could say that but I guess you could say that about any child. I mean a kid might not watch their favourite TV show and that might be stressful for them, so I don’t know. It’s hard ‘cos there’s so many different theories and then they say, “Well, if it’s hereditary, then I was going to get it anyway wasn’t I. It was just waiting for a trigger,” like I don’t know. So and it’s strange how it’s never-, you’re never born with it, it comes eventually. I find it quite weird like, especially since it’s only getting worse. It’s not-, I can’t see it growing back, if that makes sense. Like so it’s, basically, my whole life but it came at one point, which doesn’t, sounds a bit confusing I guess, so yeah, so I don’t know. Yeah, the cause, I’m kind of just am not really bothered about the cause ‘cos I’m more interested in how working with it, if that makes sense.
Some people talked about genetic predispositions and a few knew of family members who also had alopecia areata or another autoimmune condition. Others said there was no history of alopecia in their family and talked more about something in particular which they thought had ‘set off’ their alopecia, such as a stressful time or an illness. A few talked about a combination of genetics and triggers. Many found that avoiding or removing the trigger didn’t necessarily stop or reverse the hair loss. As Emma explained, it’s “something internal that I can’t change myself” but which “might change itself in time”.
Professor Moss talks about research on genetics and environmental factors for alopecia.
Professor Moss talks about research on genetics and environmental factors for alopecia.
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So genetics does affect alopecia. There is a familial tendency to the autoimmune diseases, which are genetically determined. But there are quite a lot of genes that seem to be linked with alopecia and recently there's been quite a lot of research looking across the gene, you know, across all the chromosomes, at sort of hotspots that are linked with alopecia. And there are lots of them. So it's probably what we call a polygenic condition. In fact it's a multifactorial condition. So there are lots of genes and lots of other factors, including environmental factors. We don't really know how these different genes work. Some of them are genes that affect the way hair grows within the skin. Some of them are the immune genes. Some of them are-, involve organisation of the little hair follicles in the skin. There are lots of different genes. Another sort of pointer to a genetic component is twin studies. You know, if identical-. If twins are completely identical, if one gets an illness usually the other will get that illness if it's genetically determined. Now as far as alopecia areata is concerned, the twin studies do not show what we call complete concordance. So with identical twins, if one twin has it then the other twin might get it but that's only slightly more likely than if they were just brother and sister. So we think that the environmental things are probably more powerful than the genetic things.
Arti has a family history of autoimmune conditions.
Arti has a family history of autoimmune conditions.
Age at interview: 22
Sex: Female
Age at diagnosis: 22
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Could you tell me a bit more about the links with family histories and other health conditions to alopecia?
Yeah. So they, yeah, my dermatologist sort of mentioned a lot of illnesses. The ones which stuck out which I actually had correlations with was rheumatoid arthritis. So I’ve had, people in my family have suffered from that and it’s apparently linked to that. And there was-. Also they believe that alopecia is an autoimmune disorder and my mum actually suffers from multiple sclerosis which is also an autoimmune disorder. So they also think that that might be linked, although people with multiple sclerosis don’t normally have children with multiple sclerosis, they often more likely develop different autoimmune disorders. So that’s something, I suppose. And there’s another one, oh type 1 diabetes. So I’ve had people in my family suffer from that as well. And they, they said that that makes it more likely so I’m not really sure exactly, like all the illnesses or anything, but that’s why my dermatologist said that I’m more likely to suffer from it cos I’ve quite a few people that suffer from those things.
Hannah talks about genetics and what it might be like having children with alopecia.
Hannah talks about genetics and what it might be like having children with alopecia.
Age at interview: 21
Sex: Female
Age at diagnosis: 16
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I’ve wondered if it will go on to my kids; I wondered that. I wondered if that—cos obviously you don’t know the comp-, complete like cause or anything and because it’s so unknown you think, well does that mean that your kids are gonna have it, like, can that be passed on? And it’s that not knowing. So I know that there are mothers and daughters and stuff and like people with alopecia in the family and it can run in family, I know that. So that makes me a bit nervous because I, I won’t want—well, as much as I, you could deal with it and you could get your family through it, you’d rather not have like your children have to deal with that sort of thing. But then at the same time, you know a bit better about how to deal with it, maybe, and they’d have the support of having their mum who had alopecia and things. But, yeah, it’s made me think about like, in the future of having kids if they’ll have alopecia.
Becky was surprised when she first heard alopecia areata described as an autoimmune condition. Others had heard phrases like this too, but were not always sure what it meant. Sometimes the person had been very young when they were diagnosed and hadn’t been told many details. Some felt that the doctors hadn’t explained the term ‘autoimmune condition’ properly when they were first told they had alopecia areata. It can be difficult to understand how something that happens on or in your skin with hairs can actually be about the whole body system and processes. Some explanations people had for explaining about alopecia areata as an autoimmune condition include:
- “it’s your immune system attacking itself, like your own cells, rather than intruder cells” (Annie X)
- “where your immune system effectively thinks that your hair follicles are foreign bodies [… and so will] fight it and get rid of it [hairs]” (Rosie)
- “your immune system working overtime” (Becky)
- “it kills my hair follicles” (Emily)
Biology classes at school and talking to her mum helped Elizabeth understand more about the blood tests she had.
Biology classes at school and talking to her mum helped Elizabeth understand more about the blood tests she had.
Age at interview: 20
Sex: Female
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I’ve always had a real interest in human biology and so that’s really helped my understanding because if you’re interested in something, you’re gonna know more about it so I’ve kind of always-, so it’s helped my understanding of alopecia as I’ve got older. But when I was seven I knew it was happening to me.
How did you sort of go about learning about alopecia when you were about ten onwards?
I don’t know, I think at the age of ten you kind of start to figure out that you’ve got an immune system and what it actually is and like I’m really lucky cos my mum’s a healthcare professional so my mum kind of explained some stuff to me about it. But it was more me just, I had a blood tests when I was ten and when that came back-, I never got the results for it but I remember when I was-, I remember them going, “It’s just your immune system, it’s-, it’s your, it’s your immune system,” and there being no more to that. And then when I was 15, I remember doing homework on the immune system and me going, “Mum, so-” and kind of going, “With the blood test, were they testing my white blood cells?” and because actually that’s the only way they would have known it was my immune system. And my mum’s like, “Yeah,” and I was like, “Well, why didn’t they ever tell me that?” Like they didn’t seem to give me-, like the hospital didn’t seem to give me a lot of information. And then I started A-level Biology and then we had a discussion on cells and the fact that there’s part of your cell, which I cannot remember what it’s called, that basically let’s your immune system know that the part of the body so don’t attack it and in autoimmune diseases it kind of goes-, people don’t know why but that part of the cell goes and that’s why the immune system attacks it.
Emily says most of the medical professionals she’s seen haven’t explained alopecia areata in detail.
Emily says most of the medical professionals she’s seen haven’t explained alopecia areata in detail.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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So what was it like when you saw the nurse the first time and did she suggest anything?
No.
No?
Not anything. I mean she didn’t, she had to look up what it was so the chances of her knowing like the causes behind it, or the treatments were pretty slim. And I suppose also because she was referring me she didn’t need to know that because she was like sending me to an expert. But then even the dermatologist I think she did tell me that it was an autoimmune disease but she didn’t, if I didn’t know what an autoimmune disease was she wouldn’t have explained it to me. And I had to find all that out for myself and it’s kind of good that I knew about that beforehand, but I think not, and I don’t know if there’s an expectation that doctors think that people know about things that the doctors know about, like autoimmune diseases, but I know that a lot of people don’t know what an autoimmune disease, especially, especially in the context of alopecia. And they don’t understand why it could possibly affect your hair. And I don’t know if it’s that it’s considered not important to explain that bit because I suppose we don’t really need to know what’s going on like behind the scenes, or if it’s that doctors expect us to know that kind of stuff. But I think if I didn’t know what it was I would’ve been very confused if I was suddenly told, “Oh you have an autoimmune disease, that’s why your hair is falling out. Off you go,” like. It’s, it’s quite disconcerting. So obviously I had to do all the research on that myself, which kind of yeah it makes you feel quite insecure in where you stand in terms of whether, you’re like, “Am I ill then? Am I sick? Am I okay? Do I have a disease? Like what’s going on?”
Ben’s read online about people with alopecia areata having increased chances of developing other autoimmune conditions.
Ben’s read online about people with alopecia areata having increased chances of developing other autoimmune conditions.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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I also looked into other autoimmune diseases cos apparently if you have an autoimmune disease like alopecia or any of them apparently- I read on one website you can be like, you’re more likely to get other autoimmune diseases because you’re like, what’s the word, predisposed to it I guess so. I think that worried me as well cos I read things like [ah] there’s a type of diabet-, I think it was type 1 diabetes or, you can get that, you’re more likely- you’re three times more likely to get it. It doesn’t mean I’m going to get it but, you know, that kinda worried me cos obviously alopecia is not a, a health problem apart from aesthetics but I was looking at these other things you can get. They’re all like quite bad for you in that sense. And that kind of, and also they suggest like to eat no gluten and eat healthily. So I think that’s-, I think my diet has improved significantly since, to be honest.
Explaining about alopecia areata to others was something that a lot of young people had done. Sometimes they had been asked questions, especially in school, such as "Why is your hair falling out?" and "Can I catch it?" Other times people had looked at them and stared or made a comment. This could be really upsetting, but prompted some people to try and educate others. Emily finds it “difficult to know what level of explanation you need with different people”. Rosie’s been asked questions about alopecia that have spurred her onto looking online for more information and she writes a blog to help explain about it.
Emily finds other people sometimes assume that she is sick.
Emily finds other people sometimes assume that she is sick.
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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I think it’s really difficult to explain to people I have an autoimmune disease ‘cos they’re like, “Oh no, do you want to have a lie down? Are you okay?” And it’s like, “No, like I feel perfectly fine, I’ve had blood tests, everything like I’m completely healthy.” But then I don’t have any hair and obviously when people see somebody without hair they assume they’re having chemotherapy so they, it’s something that you associate with people being very sick. And I think it’s quite interesting the way that you interact before when they assume that you’re sick, because you’re like, “Do you want me to do a cartwheel like to prove that I’m fine? Like is that going to make it better?” Like I have people offering me seats on the tube and like I feel bad ‘cos like I feel like it’s kind of fraudulent ‘cos I’m not, I’m not sick. Like I’m fine. But then you’re told that you have an autoimmune disease and it’s kind of difficult to like understand that you’re well but also that you have a disease that clearly affects you physically and visibly. And I think, I think that kind of thing needs to be explained to people that just because you have a disease doesn’t mean that you’re necessarily sick.
Elizabeth says it can be difficult to explain to people, especially children, about alopecia.
Elizabeth says it can be difficult to explain to people, especially children, about alopecia.
Age at interview: 20
Sex: Female
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More with young children, so I work with really any age but I remember a couple of weeks ago a young girl-, a young girl asked me, “Why-” like, “Why do you have no hair?” and I was like, “I have-, it’s because I’m poorly,” like that’s-, “But don’t worry,” because and I kind of had to say, “But it’s not-, it’s not a normal-, it’s not like a cold – it’s not something you can catch, so don’t worry.” And like having to explain it to like a 7 year old, 6, 7 year old is really hard without them thinking ‘I’m gonna get this’. Like so it-, whereas with-, yeah, I [sigh] people have asked and I’ve kind of-, I’ve just quite openly said, “If people want to talk to me about it then I’m-, I’d rather someone talked to me, talked to my face than speak, speak, talk about me behind my back.”
Danny has worried about his alopecia and whether it’s contagious.
Danny has worried about his alopecia and whether it’s contagious.
Age at interview: 14
Sex: Male
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So you said that your mum has talked to before about alopecia. What kinds of things would you talk to her about?
Is it dangerous…
Hm-mm.
Infectious…
So they’re things that you’ve worried about before?
A little bit.
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