Coping with Alopecia

"Alopecia is a medical condition that results in hair loss. The causes can be both physical and psychological, and the hair loss can be slight or severe, temporary or permanent. Although is neither life-threatening nor painful, it can have a traumatic effect on your life; you might experience embarrassment over your appearance and problems in your relationships with family and friends. You might also believe that your job prospects are affected.

This book, by two psychologists, one of whom has alopecia, contains all you need to know about your condition: the different types of alopecia, what causes it and how it is treated. The authors offer practical advice about living with alopecia and coping with the social consequences of hair loss. They also show how it is possible to regain your confidence and rebuild your life."

Contents

Introduction

Hair

Causes of alopecia

Stress

Seeking medical help

Available treatments

The impact of alopecia

Coping with alopecia

Relationships

Helping someone with alopecia

Recovery from alopecia

Further Information

Glossary

Index

Introduction

What is Alopecia?

Greek: alopecia - a disease in which the hair falls out

Alopecia is a dermatological disorder whereby people lose some or all of the hair on their head and sometimes on their body as well. It is a chronic inflammatory disease that affects the hair follicles. It is neither life-threatening nor painful, though there can be irritation of the skin, particularly when undergoing treatment, and there can be physical problems associated with the loss of eyebrows and eyelashes. Unfortunately, it can be extremely psychologically damaging, causing intense emotional suffering and damage to relationships. One survey by Hairline International found that 40 per cent of women with alopecia had experienced problems in their marriages or long-term relationships. Many of these partnerships had broken up. On top of this, 63 per cent of those questioned said that they had also experienced career-related problems.

Most of us do not think about alopecia — until we get it ourselves or someone close to us gets it. The misery it causes goes unappreciated, and even medical professionals often ignore the impact it has on people's lives by treating it just like any other medical condition — which it is not. It can impact so severely on self- esteem that one's sense of self or identity is broken.

Alopecia is more common than many people think. We often don't notice people who have the disorder because they may cover up their hair loss by changing their hairstyle (perhaps shaving their head or brushing hair over the bald patch), or by wearing a wig. And it is very difficult to ascertain the number of people with the problem because many do not go to their GP, or tell others. Estimates vary from 0.1 per cent to 1 per cent of the population having alopecia at any given time, with a lifetime risk estimated at 1.7 per cent. It accounts for about 2 per cent of new dermatology outpatient attendances.

It can affect anyone, irrespective of sex, race (except for Australian Aborigines), age, or socio-economic status — though there has been relatively little research carried out to assess the type, frequency or impact of alopecia on different ethnic and cultural groups, whether in the UK or elsewhere. For many, hair does not just have a significance relating to perceived attractiveness and identity — it may also have a cultural or religious significance. There does seem to be a family link, as one-fifth of people who have alopecia have a family history of the disease. With regard to age, 60 per cent of patients present with alopecia for the first time before they are 20.

There is also an association between alopecia and autoimmune diseases, which suggests the possibility that alopecia is itself an autoimmune disease. (This will be discussed in detail in Chapter 3.)

How does alopecia differ from ordinary baldness?

We need to distinguish between alopecia and ordinary baldness. This book is not mainly concerned with the latter, though some of the psychological issues are relevant — both for men and women. Many men lose their hair naturally over a number of years, usually between the ages of 20 and 60. There are 'treatments' on the market for male-pattern baldness, but it is a perfectly natural phenomenon that most men come to terms with relatively easily. In contrast, alopecia is a disorder that affects anyone — men, women and children — and can have very serious effects on someone's life, striking quickly and without obvious cause.

What happens when someone gets alopecia?

For a minority, particularly those undergoing chemotherapy, the course of alopecia is predictable. Hair is likely to fall out during the treatment, and is likely to grow back again when this is stopped. However, for most people there is no prior warning that they are going to get alopecia, and often the first clue is finding more hairs than usual when washing your hair. It is something people do not worry about too much to begin with — it is only when the hair starts to fall out in chunks that it becomes a problem.

In some people, it is not only the hair that is affected, but also fingernails. This may involve pinprick indentations on the surface of the nail, or the nails themselves can become distorted.

There is some evidence of a link between alopecia and other disorders such as eczema, allergies and asthma.

But remember, the one thing we do know about alopecia is that ifs not contagious!

Is it permanent?

For some people alopecia is a permanent disfigurement, for others it is temporary, perhaps occurring after an illness, an injury, or a stressful event. You might lose your hair quite suddenly, and then almost as suddenly it can start growing back again — weeks, months or even years later. We cannot predict when hair will grow back or in what form — sometimes it will grow back normally, sometimes it grows back much thinner and more wispy. We do not know for sure that hair will grow back, although it is far more likely to regrow if the hair loss is limited to patches on the scalp. When all the body hair falls out, there is a much lower chance of regrowth.

It is thought that somewhere between 50 per cent and 80 per cent of people with alopecia have hair regrowth within one year. However, the problem is that the disorder may recur, perhaps several times during a person's lifetime.

As we have already said, alopecia can affect you in different ways. Some people lose small patches of hair, others lose all their head hair, and some lose all their body hair too.

If you have less severe hair loss you are more likely to experience full hair regrowth, possibly in weeks or months; but if you have more severe hair loss, the hair may reappear but only as a light wispy covering. For many, particularly those with the most severe hair loss, the hair never grows back. For those with repeated occurrences of alopecia, it may be in the same places, but it can also be in different places — sometimes more serious, sometimes less serious.

The important thing to remember, though, is that there is no loss of hair follicles with alopecia, so there will always be the possibility of hair regrowth, even with the most severe cases. But it is important not to rely on regrowth — there is also the chance that you may have to learn to live with alopecia.

Can Alopecia be treated?

There is a range of medical treatments available on the market, but the evidence for their effectiveness is rather weak. The treatments can be painful; also, they may work for some people and not for others. They can work temporarily or permanently. Research into the effectiveness of treatments for alopecia is difficult to carry out because so many people (particularly with the more mild forms of the disease) spontaneously recover that it is difficult to be sure, without randomized controlled trials, whether it is the treatment that has helped or whether someone's hair would have grown back anyway. A randomized control study would involve taking a group of people with alopecia and randomly allocating them either to a treatment or a control group. Any difference in remission rates between the two groups would indicate the success of the treatment.

A further problem is that experimental trials have often focused on the more severe forms of alopecia, where spontaneous remission is rare. Yet treatments that do not work with this group may still have value with the milder forms of alopecia. Furthermore, there is evidence that some treatments work while the treatment is ongoing, but once treatment stops the hair falls out again.

What causes alopecia?

The simple answer is that we do not know for sure, although there are a number of factors associated with the onset of alopecia. Possible causes include a change in the immunological system, a genetic link, and psychological causes — and there is evidence for all three. (This will be explored in more detail in Chapter 3.) We do know that around 20 per cent of people with alopecia know of someone else in their family who also has the disorder — sometimes identical twins both get alopecia. In a genetically prone individual there may be a range of factors that could trigger the disorder, although the most likely reasons involve a combination of genetic and environmental factors.

What is the relationship between alopecia and illness?

As we have already mentioned, alopecia is associated with a number of diseases and problems, both physical and psychological. It can be a cause of another disorder, a consequence of the other disorder, or a concomitant disorder.

For example, people with skin-related problems (not only alopecia, but also acne, eczema and psoriasis) tend to have a higher rate of psychiatric disorders than the general population, and people with alopecia experience more neurotic depression than people without alopecia. They also experience more generalized anxiety, depression and phobic states. However, it is often very difficult to establish whether the alopecia is a cause or a consequence of these psychological disorders. It does seem likely, though, that there is some kind of genetic predisposition towards both psychiatric disorders and alopecia. (We will explore this in more detail later in the book.)

What we don't know

By now it will have become clear that there is a lot we don't know about alopecia and its causes. The reasons for the disorder obviously vary from person to person — it could have a psychological cause, it could be the result of a physical trauma such as an injury to the head, or it could be genetic. Also, as mentioned above, there are a lot of treatments available, but we cannot predict with any certainty who will respond to them, and who will not.

If you, or someone close to you has alopecia, no doubt this all sounds very pessimistic, but it is best from the outset to be as honest as we can about the problem. Alopecia can be a serious disfigurement disorder, one that causes a great deal of distress to the sufferer. We do not have a guaranteed cure, but there are certainly ways in which we can make life easier for the person with alopecia. There is advice that can, if used well, reduce the distress and suffering.

Of course, for those with more serious forms of alopecia, where eyebrows and eyelashes fall out, there are added issues of psychological and physical discomfort. The loss of eyebrows and eyelashes fundamentally changes the face of the individual, and can also create practical problems. For example, water gets in the eyes (because brows and lashes provide protection, like guttering on a house); and eyes become sore because without lashes the eyelid turns in on itself and the cornea can become scratched.

So while we still do not know enough about alopecia to be able to effectively treat it, we do know enough about people to provide appropriate support and guidance, to help cope with the problems that arise as a result of alopecia — a main aim of this book.

Wigs

People with alopecia, particularly women, commonly use wigs. Wigs are, for many, the most effective means of coping with the social world. Women's wigs tend to look more natural than men's — perhaps because more women use wigs so there is a bigger market, perhaps because appearance is more important for women than for men — so women demand higher standards. In the UK, wigs can be obtained via the NHS. (The subject of wigs is explored in more detail later in the book.)

Types of alopecia

Alopecia is classified according to its severity — in other words, the extent to which someone's hair is lost. There are many different types of alopecia, the most frequent of which is alopecia areata.

Alopecia areata

This is where you lose some, but not all, of your head hair. This usually occurs in patches, on any part of the head. It often begins with a single round patch of baldness, which can quickly spread. It can occur on other parts of the body, but it is more frequent and more noticeable on the scalp. It may be a single patch of hair loss, perhaps just a centimetre or two in diameter. It is more likely to occur at the back of the head than at the front for males, and more often towards the front for females. Some people experience repeated alopecia areata in the same area; some have it in different areas. Men might have alopecia in the beard. If you have alopecia areata you can often cover up the bald patch on your head with the rest of the hair. The prognosis for this type of alopecia is generally good — you are likely to experience hair regrowth, where the hair grows back as normal, though you may lose it again in the future. But this is not necessarily the case: for some, the hair grows back as a fluffy patch that does not match the rest of the hair, and for others it does not grow back at all. Overall, though, it is the least serious form of alopecia.

About 65 per cent of people with alopecia areata only experience one or two patches of hair loss, which often regrows spontaneously after a few weeks or months. Alopecia areata is unpredictable — some people only have a single bout of it, others experience it repeatedly. Sometimes the new hair growth is very fine and unpigmented; on other occasions it grows back normally. Regrowth can occur in one area, at the same time as another bald patch is appearing elsewhere.

Alopecia totalis

This occurs when you lose all your head hair, but not your body hair - and (usually) not eyelashes and eyebrows. The prognosis is not as good as for alopecia areata, although many people do experience at least some regrowth. This regrowth may occur in patches, and it may only be fine wispy hair. Figures vary, but the British Association of Dermatologists estimates that 14—25 per cent of people with alopecia have alopecia totalis.

Alopecia universalis (or alopecia disseminata)

This is where you lose all your head and body hair, including your eyelashes and eyebrows, along with underarm and genital hair. This is the most severe form of alopecia, but it is also the rarest. The prognosis for someone with alopecia universalis is not very good, for few will achieve total regrowth of hair. It is estimated that less than 10 per cent of people with alopecia universalis will experience full recovery.

It is not clear exactly how many people with alopecia areata will go on to develop totalis or universalis — estimates vary from 7 per cent to 30 per cent.

Alopecia androgenetica

This is commonly known as ordinary baldness, or male-pattern baldness. As mentioned earlier, this is not the focus of this book as hair loss in the male is normal, and generally does not cause intense distress. However, there are occasions when it can become a problem — both for men and for women. In these cases this book may be of some help.

Although ordinary baldness is more common in men, it also occurs in some women. It often appears as thinning hair across most or all of the head. It often occurs after the menopause, but it can also happen in younger women who are genetically predisposed to the condition. It can be triggered by eating disorders and by the progesterone present in some contraceptive pills. This form of alopecia can be just as serious a problem for women as the other forms of alopecia.

Other forms of alopecia and hair loss

There are other forms of alopecia, such as alopecia medicamentosa, where hair loss is caused by some medical treatment (such as chemotherapy), or alopecia congenitalis, where a child is born with no hair.

Alopecia diffusa is where the individual loses some hair across a large part of their scalp or body, and this can be difficult to distinguish from other forms of hair loss. The real difference is that alopecia diffusa tends to be more serious; it can be a progressive hair loss.

Another type of the disorder, alopecia barbae, is specific to men and affects only the beard.

Telogen effluvium is a human moulting condition that occurs after the body has experienced a severe trauma. It can occur after a high fever, childbirth, or extreme shock.

Trichotillomania is the term given to the condition whereby people have an obsessive compulsive disorder that leads them to pull out their own hair.

Counselling

If you have alopecia you can become profoundly upset and disturbed by the hair loss, so it is important that you can discuss your disorder, and its likely course, with a specialist. If you have alopecia you need to know the truth about the illness, and be aware that many medical treatments have limited effectiveness, and that there may be relapse after treatment. On the other hand, as already noted, hair regrowth occurs spontaneously for many.

The problems experienced, particularly by women and by children, must be taken into account in any counselling offered. Children may experience problems at school, such as bullying and name-calling, or being ostracized. Women may have difficulties because their hair is central to their appearance. A bald-headed man is fairly normal; a bald-headed woman is not — at least, not in Western society.

For some, support groups such as Hairline International and Changing Faces, or the website www.keratin.com, are useful (see Further Information at the back of this book). They provide opportunities to discuss alopecia with fellow sufferers, and to learn from others how they adapt to and cope with their hair loss.

Alopecia is a form of disfigurement, and it can lead to massive changes in the ways you perceive yourself personally and socially, at home, at school and at work. Those who do not suffer from alopecia generally have little understanding of the impact it can have on someone. People have been known to lose their jobs because of their appearance. One of the purposes of this book is to try and increase awareness and understanding of the problem. Only by discussing the subject in some detail, exploring what it means to have alopecia, can we help those who suffer with the condition. The rest of the book will hopefully go some way towards this enlightenment.