So as well as steroids, which work in alopecia areata by suppressing the immune system, sometimes doctors prescribe other immune-suppressive drugs. In children in my practice we actually don’t do that, because immune-suppressive drugs do have adverse effects. So obviously if you’re suppressing the immune system, you’re laying someone open to other infections, that’s what the immune system’s there for. But some people would use drugs like cyclosporine, azathioprine, and some other potent immune-suppressive drugs. I think particularly in adults, if they’re really, really desperate for a treatment, those are sometimes used. But I think people obviously need to understand the risks of using that treatment, the fact that it doesn’t always work. And even if it works, the, the improvement is not always maintained. And that it’s not something you would want to do on several, on repeated occasions.

I think as doctors we have to be careful not to just focus on the skin problem, on the scalp problem. And obviously it is a big problem, it’s not just a little patch of hair loss that needs some cream, it’s obviously a big problem to individuals and to way-, the way they perceive themselves, their self-image, the way other people perceive them. It can mean that they get bullied or teased at school. And so doctors-, I think we do have to remind ourselves that that emotional aspect is very important to patients. In terms of resources, there is a very good patient support group called Alopecia UK. And it does have an area for young people, HeadzUp. And so there are lots of resources there where people can find out more information, find out how other people have dealt with it. And I think I’m a great believer in patients comparing experiences, and the, there are things that other people have found in practical terms, living with the condition, that we don’t know anything about. And so I do think it’s very helpful to put people in touch with other people. Sometimes I see a child with alopecia and if I say to that child, Have you ever met anyone else who’s got this condition? They’ll say, No, and they think they’re the only person in the world. So I think that putting people in touch with other people is very reassuring and it makes it feel more normal and it gives them an opportunity to talk about the problems in a way that they can’t talk about it, to a health professional.

So if people decide they definitely would like a wig, then they are available on the NHS. There’s a limit to two wigs per year. And you don’t get the full cost of the wig. Sometimes the patient has to pay a proportion of the cost. And what happens is, they have to be prescribed from hospital, the GP can’t prescribe them. So the hospital doctor, dermatologist, will fill in what’s called an Appliance Form. They give that to the patient or the parent and there’s a limited number of centres, places, that provide wigs, that work with that particular hospital. So they’ll advise on where to go to. They go along there, choose a wig and then the supplier will send the invoice to the hospital, so the hospital pays. The other limitation is that only synthetic hair wigs are available on the NHS. You can’t get natural hair wigs on the NHS. They’re quite expensive. And you do need to pay for those. I think you can get a proportion of the cost back from the NHS, but certainly not the full cost. But having said that, acrylic wigs are very, very effective. They’re very, very convincing. And the only problem, particular problem I’ve heard is that if they get too hot. So if someone’s, you know, gets too close to the stove when they’re cooking [laughs] you can sometimes get a kind of frazzling effect with the acrylic which you wouldn’t get with a natural hair wig. So obviously you have to be careful with it. But wigs, the acrylic wigs, are very, very good. And if it’s been well fitted-, not many people can fit children but, you know, there are suppliers who can do that, they can be very effective and make a huge difference to people’s lives.

There is another way of suppressing the immune system in the scalp, to try and improve the alopecia areata, and that is with a product called diphencyprone. Which actually, it sounds a bit paradoxical really, it actually promotes an immune response in the scalp. So it’s an irritant, it produces an immune reaction, it produces some inflammation and that inflammatory response kind of interferes with the immune response that’s causing the alopecia. And that does seem to work. So people have that treatment and it does seem to work. The downsides are that it has to be done in hospital because it’s quite a toxic substance. It has to be painted on and then you wait a few days until the body starts to recognise it, and then you get a reaction. You get like a dermatitis on the scalp which quite-, can be quite unpleasant. And then you have to have repeated treatments, applying the stuff. Which can be done at home after the first few times. And each time you apply it, you get an allergic reaction to it, so you get that inflammation, dermatitis, in the scalp again. And that can improve the growth, it can kick start the alopecia into recovery. And that is quite widely used.

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.

The first line treatment for alopecia is with steroids. And usually we start off with a cream. Of course before that we need to make sure that the person needs and wants treatment. And I would always explain that sometimes it gets better by itself, that treatments are not a hundred percent reliable, we do not have a perfect treatment for alopecia. And some, sometimes there’s a scenario where the child is actually not that fussed about it, and maybe the parent feels very strongly they must have treatment. And so obviously we’re cautious in that situation, that it’s what is right for the child, rather than right for the parent. But often people do want treatment. Even if we think well it’s quite a small patch, and they can cover it with their hair. But just the fact of having it makes people want to have it treated, they don’t like to have it there. So we would start off with steroid treatment. Now we would use a steroid cream, which is the sort of thing that’s used in eczema, they’re very widely used. There’s a lot of anxiety about using steroids, because if you over-use steroids they can thin the skin, they can cause-, they can increase the risk of infections on the skin. And if you put them on a large part of the body, they can get absorbed and cause the same sort of effects as taking steroids by mouth. But these things really do not apply when we’re using steroids on a small patch on the scalp. It’s really unlikely that any of those side effects would occur. So we would use a moderately potent steroid. We would advise for it to be put on twice a day. And I always suggest a limited period. The simplest thing is to say, Well, I’ll prescribe a 30 gram tube, a small tube of steroid, use it twice a day. And at the end of that time, if you’ve finished the tube or if you’ve got to a month and absolutely nothing has happened, it’s really not worth persevering. And on the other hand, if it has provoked some regrowth, then again it’s not really worth persevering because you’ve kind of kicked the system back into play, and the immune system is suppressed now and it’s starting to regrow. And what the steroid is doing, is it’s suppressing the immune cells in the skin in that location, that are attacking the hair follicles.

So if we’ve tried steroid treatment and it doesn’t work, then we might consider moving onto steroid injections. Now the problem with steroid injections is that they’re painful. And obviously the more you do, the more it hurts. And they only really work where you inject. It’s not like having a vaccination in your arm that affects your whole body. The steroid injections just work where you inject. So if you’ve got lots of patches and you want them all treated, then it’s lots of injections. We can use an injecting device which sort of squirts things into the skin under high pressure, without the needles. And you get several points injected at the same time. Which is slightly less painful than a needle, but it still hurts. So that’s the main drawback. It is more effective than a cream. It usually needs to be done on more than one occasion. So, each session there’d be several injections in all the places affected. Need to come back and have more treatments. See how it goes. If it’s working well, then we would continue, and if it’s not working at all after four or five injections we probably would advise not continuing.

Some people prescribe steroids by mouth. There’s no doubt that a course of high dose steroids does improve alopecia areata. But firstly the improvement is not always maintained, so when you come off it, which you have to do, the hair would stop regrowing and may come out again. And, of course, oral steroids have all sorts of side effects. And they can affect the body’s immune system. They can affect children’s growth. They can make people put on weight and gain fluid. And lots of adverse effects. So, in general, we feel that it’s not justified to give oral steroids for alopecia areata. But having said that, some people are so distressed by their alopecia areata that they’re very keen, even if it has side effects. So often that’s a difficult conversation to have with people, to try and make clear, make sure that they understand the risk-benefit ratio.

Minoxidil is widely thought of as a treatment for alopecia. It’s not available on the NHS, because the evidence for it working effectively is not very good. In the UK, there’s a body, the MHRA, which looks at different products and only allows them to be prescribed if there’s evidence that they’re effective and safe. And there isn’t adequate evidence that minoxidil is effective. It’s available over the counter, very expensive, in different concentrations. And it is popularly used. And patients who use it often say it has helped. But in general I think what it does is it produces a little bit of sort of fuzzy regrowth, as soon as you stop using it, the improvement stops, it’s not persistent. And although in, in clinical trials where people have measured, you know, the minute hair growth – yes, they can say it works, produces some hair growth, but it does not often produce a cosmetically acceptable level of regrowth. So it doesn’t make your hair all grow long again, it tends to just produce a little bit of regrowth to cover the area. For some people that’s enough. But it’s not reliable. And it’s not very effective.

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.

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.

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.

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.

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.