Alopecia (young people)

What is alopecia? A medical overview

Alopecia is the general name for a number of hair loss conditions. As such, the main symptom is hair falling out and/or not re-growing. One subtype of alopecia is alopecia areata, which is sometimes categorised as: areata (patches of hair loss), totalis (near-complete hair loss on the head) and universalis (near-complete hair loss all over the body).

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.

Professor Moss talks about the prognosis of alopecia and likelihood of regrowth.

Professor Moss talks about the prognosis of alopecia and likelihood of regrowth.

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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 can affect different hair-growing areas of a person’s body. This includes the scalp and face (including eye brows, eyelashes and facial hair), but also body hair such as on the arms, underarms, legs and around the genitals.
 
Alopecia areata is an autoimmune condition. The causes of the hair loss are when a person’s immune system targets their hair follicles. Sometimes there is a trigger to start this happening, but it varies from person to persona and it is not always possible to identify why alopecia started.

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.

Professor Moss talks about possible triggers of alopecia areata.

Professor Moss talks about possible triggers of alopecia areata.

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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.
Not everyone with alopecia wants medical treatments. For those who do, there are different medical treatments available. Examples include steroid treatments in different forms: topical (applied to the skin), injections into the skin and tablets. Some types of treatment can be bought from a shop (‘over-the-counter’), such as minoxidil topical treatments. Other treatments must be prescribed after visiting a medical professional such as a General Practitioner (GP), nurse or dermatologist. Some treatments are procedures done by medical professionals, such as topical immunotherapy.

Professor Moss talks about steroid treatments (creams, injections, tablets) for alopecia areata.

Professor Moss talks about steroid treatments (creams, injections, tablets) for alopecia areata.

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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. 

Professor Moss talks about topical immunotherapy using the drug diphencyprone (DCPC).

Professor Moss talks about topical immunotherapy using the drug diphencyprone (DCPC).

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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.
Some people choose to wear a wig or hat to cover alopecia on their scalp. If a person with alopecia and their dermatologist agree that a wig would be helpful, the dermatologist can write them a prescription. This can help the person get a wig for free or at a lower cost.

Professor Moss explains the NHS allowance for wigs.

Professor Moss explains the NHS allowance for wigs.

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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.

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