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Chronic Illness

Chronic Illness

Patterns of health, sickness, and death differ dramatically among countries based on levels of economic development, health policies, and medical technologies. By the mid-1900s, people living in developed (industrialized) countries experienced a sharp decline in their incidence of acute, infectious illness and an increase in rates of chronic illness. The National Commission on Chronic Illness defines a chronic illness as having one or more of the following characteristics: It is long-term or permanent; it leaves a residual disability; its causes, natural course, and treatment are ambiguous; it is degenerative; it requires special training of the patient for rehabilitation; and it requires a long period of supervision. Examples of chronic illness include asthma, allergies, heart disease, diabetes, hypertension, stroke, cancer, cystic fibrosis, sickle-cell disease, varicose veins, arthritis, cirrhosis of the liver, renal disease, and mental illness. As these examples suggest, chronic illnesses range in severity from those that are relatively mild and can be controlled by medical therapies and changes in health behaviors to those that are severe, degenerative, and terminal, causing disability and creating the need for long-term, extensive medical care. Chronic illnesses, now the leading cause of death in industrialized countries, often develop gradually due to a combination of environmental, genetic, or social factors. In many cases, the specific cause of a chronic illness cannot be determined, and its diagnosis and treatment can be difficult. This shift in the disease burden from acute to chronic illness has several important consequences. First, it accentuates global disparities in health and wellbeing, as most people living in less-developed countries have shorter life spans and high rates of death from acute, parasitic, infectious, and/or poverty-related illnesses. Second, chronic illness challenges the assumptions of modern medicine which, based on the "germ theory" of disease, has focused on finding cures for short-term illnesses with clear causes. Finally, the rise of chronic illness has increased the role of families in providing care for their sick and/or disabled members and caused governments to reassess their health policies.

Sickness in Historical Context

Sickness and death historically were caused mostly by poor nutrition, inadequate housing, unsanitary living conditions, poverty, warfare and—as population density and urbanization grew—exposure to bacteria, parasites, and communicable diseases. These conditions gave rise to acute illnesses such as influenza, scarlet fever, whooping cough, polio, pneumonia, and tuberculosis. In most cases, acute illnesses occur suddenly and are characterized by a sharp increase in discomfort and pain due to an inflammation, and are of short duration. Whether endemic or epidemic, these illnesses contributed heavily to the high mortality rates and short life spans among persons living in pre-industrial societies. Notable among acute, communicable diseases was the bubonic plague, which caused more than 20 million deaths in Europe between 1340 and 1750 (Cockerham 2001). Prior to the 1900s, acute health conditions rarely could be treated successfully by medical therapies, so they were self-limiting, as they led to either spontaneous recovery or to death within a fairly short period of time. Access to doctors was limited, as were effective medical therapies, so families usually took care of their own sick members; however, the duration of that care tended to be relatively short. By the 1700s, however, industrialization, modernization, new medical technologies, and public health measures were transforming the lives of people living in many Western countries. These forces eventually restructured the workplace, produced a system of monopoly capitalism based on class and wealth, and created a global economy dominated by a handful of industrialized nations. One result of this uneven level of economic development has been substantial disparities in wealth and health among populations living in developed countries and those living in less developed, or developing countries.

In its early stages, industrialization resulted in a rapid deterioration in the living standards and working conditions of most people living in Western countries. Traditional families and economic systems were disrupted as populations migrated into urban areas in pursuit of employment. The lack of clean water and sanitation, the spread of environmental toxins, population concentration, malnutrition, and the nature of industrial work increased sickness and death from contagious diseases. Gradually, public health measures and improvements in diet, housing, water supplies, and sanitation reduced the spread of deadly diseases in these countries. However, as their economic and military dominance grew, industrialized countries rapidly gained control over many underdeveloped countries. Through colonialism and the exploitation of material and human resources, these countries lost control of their economies and suffered dramatic increases in infectious diseases and death. Today, level of economic development has become a major predictor of patterns of health, illness, and death: People living in developed countries usually have better health profiles and longer life spans than those living in developing countries. Life expectancy at birth now ranges from a high of more than eighty years of age in developed countries to less than fifty years in some developing countries (Population Reference Bureau 1998). This gap in life expectancy is largely due to the fact that people in developing countries are still disproportionately affected by acute, infectious, and/or parasitic illnesses that lead to early death. Only about 1 percent of people in developed countries die from infectious and parasitic diseases, compared to 43 percent of those in less developed nations (Weitz 2001).

People in developed countries have experienced the "epidemiological transition"—a shift in the disease burden from high rates of death from acute, parasitic, infectious diseases, and short life expectancy to longer life expectancy and high rates of chronic diseases. The first phase of the transition consisted of improvements in hygiene, sanitation, living conditions, and nutrition, which curtailed the spread of contagious disease. Many less developed societies (e.g., Sri Lanka, Cuba, Costa Rica, Kerala, and China) have substantially increased life expectancies through these measures, and by providing greater education, independence, and family planning resources to women (Caldwell 1993; Hertzman and Siddiqi 2000). The second phase in the transition was the rise of scientific medicine. Medical inventions and discoveries during the mid-1800s, especially in Germany and Austria, led scientists and physicians to reformulate the problem of disease and focus on medical intervention to heal diseases. Rudolf Virchow's discovery of cellular pathology was a major breakthrough, as was Robert Koch's and Louis Pasteur's confirmed the link between bacteria and illnesses (Cockerham 2001). At that time tuberculosis, known as the "white plague," was still the leading cause of sickness and death in Europe and the United States. Koch isolated the germ that caused tuberculosis and Pasteur, proving that many diseases were caused by the spread of bacteria, advanced the use of vaccinations to prevent diseases.

Advances in medical science, the development of more accurate diagnostic technologies, and use of antiseptic surgery, gave birth to modern scientific medicine. The germ theory of sickness became the basis of medical practice and the medical approach to dealing with disease. Scientific medicine's success at reducing infectious disease generated great enthusiasm that a cure for virtually all diseases would eventually be found. Pursuit of the "magic bullets" of medicine, or drugs that would "miraculously" heal diseases, became the focus on medical science. Control over contagious diseases and the germ theory of sickness gave rise to a specific conceptualization of health and illness described as the medical model of disease. The medical model of disease assumes there is a sharp and clear distinction between illness and health, based on the belief that sickness can be readily detected by diagnostic tests and confirmed by physicians. Because it is based on acute, infectious diseases, this model also assumes that diseases have specific causes and clearly distinguishing characteristics, and that they can be healed by medical therapies (Mishler 1981).

The development of modern medicine, combined with an expansion of industrialization and specialization, directly affected families in Western nations. Families in agricultural societies were typically large and multi-functional entities that emphasized economic self-sufficiency through the productive labor of all family members. Industrialization, however, moved economic production from homes to factories, excluded women from the workforce, and created the ideology of the breadwinner-homemaker family as best suited to the needs of the industrial economy. One of the most important changes was the loss of family functions. Families were redefined as specialized institutions with two important functions: raising children and meeting the emotional needs of its members. The modern nuclear family was seen as too small and emotionally bonded to effectively care for their sick members, and it was admonished to leave medical care in the hands of professionals. Talcott Parsons, a leading sociologist of the 1950s, argued that the use of physicians and hospital care was functional for families in that it protected them from the disruptive aspects of illness and helped motivate the sick person to get well (Parsons and Fox 1952). Parsons's family theory was consistent with his concept of the sick role, which described the social expectations governing the behavior of sick persons. Essentially, sick people were seen as exempt from their usual social responsibilities but obliged to try to get well, specifically by seeking competent medical advice and complying with medical treatments. The sick-role concept reinforced the medical model by assuming that illness was a temporary departure from health that was best handled by doctors and health care institutions. By the 1960s, however, these theories were being challenged by the growing prevalence of long-term, chronic health conditions.

The Rise of Chronic Illness

Control over acute, infectious illnesses has led to longer life spans for many populations, but also growing rates of chronic illness. Chronic illnesses, however, are not randomly distributed in populations. Although level of economic development is a major predictor of health and life span, patterns of sickness and death also vary within countries based on factors such as social class, age, gender, and race. Wealthy and middle-class people in all countries have better health profiles and longer life spans than those who are less affluent (Fosu and Subedi 1996; Reid 1998) and, in both developed and developing countries, high levels of economic inequality predict higher rates of early death (Lobmayer and Wilkinson 2000). The bulk of the disease burdens falls to the poor and lower classes in all countries, as they are most likely to experience malnutrition, poor living and working conditions, and stressful lives. Acquired immunodeficiency syndrome (AIDS) is a chronic illness that has reached epidemic proportions in parts of Africa, and poverty among some groups in the United States has been associated with a resurgence of acute, infectious illness. Age is also a crucial variable in the distribution of chronic illnesses, as longer life spans help account for the prevalence of chronic conditions. In most developed countries, the number of elderly (over age sixty-five) people has grown tremendously. Among the elderly, a few chronic illnesses, specifically stroke, cancer, and heart disease, are the leading causes of death, whereas arthritis and diabetes cause most sickness (Weitz 2001). This pattern is reversed for children, however, who are affected by more than two hundred different chronic conditions and disabilities (Ireys and Katz 1997). At least partially because they live longer, women in developed countries have higher rates of chronic illness than do men, although they are less likely than men to have life-threatening chronic illnesses. Finally, race-ethnicity affects health and access to health care, with marginalized racial groups experiencing more sickness and early death than dominant racial groups. Much of the racial difference is due to higher levels of stress and poverty, and less access to health care (LaVeist 1993; Williams 1990). As Wagar Ihsan-Ullah Ahmad (2000) notes, when racial minorities seek health care they are more likely to have their citizenship rights questioned, face language barriers, be blamed for their own health problems, and receive inadequate medical care (Ahmad 2000; LaVeist 1993).

The proliferation of chronic illness challenges the medical model of illness and the current organization and focus of medical care. The medical model of illness has traditionally focused on discovering the link between specific illnesses and their biological agents (e.g., "germs"). Chronic illnesses, however, are rarely the result of a specific pathogen. In many instances the symptoms and course of chronic conditions are variable and ambiguous, so getting an accurate diagnosis can be a long and difficult process. Persons with chronic illnesses often ignore the illness, self-medicate, and/or unconsciously adapt to the symptoms of the disease, especially if they are relatively mild (Charmaz 1991). Most symptoms of illness are treated without the assistance of medical experts: It is usually only when symptoms become persistent, disruptive, visible, and difficult to explain that physician care is sought (Mechanic 1995). Even after medical attention is sought, the gradual and sporadic appearance of symptoms or the unusual nature of the disease may make an accurate and early diagnosis difficult (Hill 1994). In the end, the patients may be diagnosed with diseases they have never heard of. As one patient pointed out:

After being sick, or knowing there was something wrong for nearly 17 years, I got a diagnosis of Progressive Systemic Sclerosis, which I had never heard of before. But I was so excited, I was so thrilled for this man to be telling me I had this disease! It was stupid, you know—to have an answer. It didn't matter that it is a potentially fatal disease. None of that stuff mattered! (Thorne 1993, p. 26)

The medical model of illness also has been primarily oriented towards an acute curative model of care that emphasizes emergency treatment and the use of advanced technologies (Thorne 1993). Chronic illnesses, however, are often long-term, incurable, and only rarely can they be prevented by direct medical interventions. The causes of chronic illnesses are often complex and/or ambiguous: Some, such as sickle-cell anemia (found mostly among Africans and African Americans) and Tay-Sachs disease (found among Jews of East European descent) have a genetic component. Others are tied to lifestyle factors or a combination of genetic and environmental factors. Sedentary lifestyles, tobacco and drug use, poverty, and exposure to environmental toxins all affect the likelihood of acquiring a chronic illness. The focus of care for most chronic conditions is managing the illness rather than healing it, yet patients often find no consistent relationship between adhering to medical advice and regimens and the course of the disease. Persons with sickle-cell disease, for example, are often advised to avoid physically rigorous activities, but as one victim pointed out:

I remember getting a [pain] crisis and I weren't doing nothing strenuous, and I weren't in the cold, and I wasn't doing nothing to bring it on. Basically I sat down and done nothing and I was still ill so I just couldn't do nothing to prevent it. That's what was making me so fed up with it. I mean, I don't know, what else are you supposed to do? (Atkin and Ahmad 2000, p. 51)

Because neither patient nor doctor experiences the gratification of a complete recovery, chronic illnesses have been described as medical failures. Patient compliance becomes a major issue because many medical therapies are expensive, inconvenient, and only marginally effective. The most salient feature of chronic illness is its permanency.

Living with Chronic Illness

There is considerable variability among chronic conditions in their severity, symptoms, and the extent to which they impose limitations on their victims. Some are relatively mild "lived-with" conditions that require lifestyle changes and/or compliance with medical regimens, whereas others are severe, life-threatening, and/or degenerative. In either case, the first step in living with chronic illness is emotional acceptance of the diagnosis and its implications. The diagnosis of chronic illness can generate intense emotional distress in patients and their families. Parents of chronically ill and/or disabled children often experience shame and guilt, and these feelings are exacerbated if they feel responsible for the condition. Their emotional distress is often manifested as feelings of extreme vulnerability, helplessness, and uncertainty over the future (Cohen 1993). As the mother of a fifteen-year old diabetic son said: "I was completely devastated, I was—just really couldn't believe it, like the rug had been pulled out from under me" (Williams 2000, p. 262). In most cases, these feelings wane as individuals accept the diagnosis and begin to cope with its implications. Some research, however, challenges the notion that people move through a series of stages that culminate in emotional acceptance of the illness. Parents may experience chronic sorrow, a "continuous sense of sadness that does not exhibit stages such as shock, anger, and guilt" (Shannon 1996, p. 322). Others deny the diagnosis for an indefinite period of time—often years. For example, a study of families with children who have sickle-cell disease found that mothers denied the diagnosis for a number of reasons—fear that it was racially motivated, the belief that their children were not like others who had the disease, and because they did not want to face the reproductive implications of passing the disease on to future children (Hill 1994). Although denial is typically seen as maladaptive, some research has indicated that denial can have beneficial effects, such as reducing psychological distress and allowing people to continue to participate in important roles and activities (Handron 1993).

Depending on the nature and severity of the condition, living with a chronic illness can prove extremely challenging. Psychologically, people with chronic illnesses experience a number of fears, for example, the fear of keeping their body and self-esteem intact, of losing love, relationships, and the approval of others, and of pain and discomfort (Miller 2000). Constant, recurrent, and/or unpredictable episodes of pain often cause feelings of loss of control. This pain can be constant and all-consuming, making symptom management and participation in everyday activities difficult. Peter E. S. Freund and Meredith B. McGuire (1991) have noted that chronic pain can jeopardize social relationships and lead to isolation, as it often invokes invalidating responses from others. The pain experienced by chronically ill persons often has no organic basis and cannot be verified medically, so others may doubt its existence. This can lead to loss of social relationships with others, as the empathy and support of friends and relatives begins to wear thin. Chronically ill people also have to contend with medical treatments and their side-effects, inexplicable remissions and exacerbations of the disease, and changes in lifestyles, activities, roles, and relationships. Some changes are relatively minor; however, others are substantial and are often experienced as a series of losses—of freedom, of hobbies, of employment, of physical appearance and abilities, and even of friendships. Many cause a loss of control over the body, which can lead to stigma and devaluation. In describing living with a chronic respiratory illness, characterized by lack of energy and breathlessness, Clare Williams (1993) sees the illness as causing "dwindling social and recreational lives; social isolation; problems of social interaction, stigma, legitimacy and the tolerance of others towards the condition; the threat or reality of 'dependency' . . . and problems pertaining to family life" (p. 130).

Chronic illness is accompanied by a great deal of uncertainty, since even with the best medical care, its course and severity can vary from patient to patient. Mothers of children with sickle-cell anemia experienced considerable uncertainty over how the disease would affect their children, especially when the diagnosis was made prior to the manifestation of symptoms (Hill 1994). Rose Weitz (1990) interviewed persons who have AIDS and found uncertainty to be a major theme. People living with AIDS experience a number of uncertainties: uncertainty about the meaning of illness symptoms, why they had become ill, their ability to function the next day, whether they would be able to live or die with dignity, and whether their health regimens would prolong their lives or heal the disease. Because self-image is integrally tied to the body and a sense of having control over it, the self-image can be dramatically altered by chronic illness.

Family Caregiving

Although modern family and medical ideologies of the mid-1900s argued the wisdom of greater reliance on physicians and medical institutions, the emergence of chronic illness has led to a reassertion of the importance of families in caring for the sick. Modern medical interventions and technologies that have extended the lives of chronically ill persons without affecting complete recovery have increased the responsibility of families for caring for the sick. Many chronic illnesses that once signaled early death (e.g., kidney failure) or institutionalization (e.g., mental illness) can now be managed by medical therapies administered in the home. Moreover, the escalating costs of health care in most countries has led to restrictions on access to physicians and medical facilities and fosters an interest in self-care and family care. Providing long-term care for chronically ill or disabled family members can disrupt the normal functions of families, and it almost always causes stress. Examining caregiving within the context of stress theory, Carol S. Aneshensel, Leonard Pearlin, and Roberleigh Schuler (1993) make a distinction between primary stressors, caused by performing the work required to care for the sick family members, and secondary stressors, problems that emerge in social roles and relationships as a result of caregiving. This distinction highlights the fact that caregiving work is not only stressful because it requires the performance of difficult physical and emotional tasks—for example, supervising, monitoring, encouraging, medicating, lifting, bathing, and feeding—but also because of secondary stressors: marital discord, social isolation, economic strains, and family dysfunction.

Family caregiving for children can start from birth and last indefinitely, especially if the illness or disability prolongs their dependency. Research indicates that about 20 percent of all U.S. children have a chronic illness or disability, and 10 percent have problems that create caregiving demands, including millions who are disabled (Butler, Rosenbaum, and Palfrey 1987; Sexson and Madan-Swain 1993). The amount of caregiving work performed by family members ranges from fairly minimal to extensive, depending on the nature of the illness. Many children have "lived-with" diseases such as asthma, epilepsy, or diabetes that cause episodic health crises, but can often be managed on a daily basis through special diets, medications, and changes in activities. Asthma, the most common childhood chronic illness in the United States, affects five million children and is a growing cause of sickness and death (Bleil et al. 2000). Asthma is episodic in nature, causing periodic bouts of breathlessness, wheezing, and coughing. A study of teenagers with asthma by Williams (2000) describes the caregiving role of mothers as "alert assistants" who monitor and supervise their children's compliance with medical treatments and manage medical crises. On the other hand, illnesses like kidney disease, cystic fibrosis, and spina bifida can be progressive and cause constant pain and impairment.

A great deal of research has focused on children with cystic fibrosis, the most common lethal genetic disease in the United States with an incidence of 1:200 white births (Solomon and Breton 1999). Cystic fibrosis, a progressive disease that leads to early death, requires extensive caregiving work, including "oral medications and special diets, aerosol therapy and bronchial drainage (prescribed two to four times a day, requiring about an hour each time), exercise, and mist tent therapy at night" (Patterson 1985). Providing such extensive care for their children can place a strain on interactions between parents and their sick children. C. Ruth Solomon and Jean-Jacques Breton (1999) observed parents of young children (ages one to two) with cystic fibrosis over a twelve-month period and found that, compared to parents of healthy children, they were more controlling, more serious, and less encouraging in their interactions with their children. Medical therapies are complex, difficult to learn, and can occupy so much time that they become the center of family life. They may also be risky and interfere with normal parental behavior, which ordinarily centers on being nurturing and supportive. One study of pediatric ambulatory dialysis found that parents have difficulty reconciling parenting with the administration of medical regimens:

Parents are asked to monitor the child's physical state intensely. They are also told not to allow the child's medical problems to become the main family focus. Parents are instructed that an error in the sterile technique could result in their child's serious illness, yet staff is also concerned that parents should not experience excessive anxiety. Parents are asked to function as both medic and parent, and yet it is also expected that the child will be able to progress through the normal stages of separation and individuation (LePontis, Moel, and Cohn 1987, p. 83).

In addition to the work and anxiety entailed in carrying out medical tasks, parents must also address the psychological and emotional needs of the child with chronic illness or disability. Although most children with physical disabilities do not develop mental health problems, they are much more likely to do so than healthy children because of greater social isolation, alienation, and poor school performance (Patterson and Geber 1991; Solomon and Breton 1999). Chronically ill children living in dysfunctional families exhibit much higher rates of psychiatric disorder than those living in well-functioning families (Bleil et al. 2000). Both parents and medical experts endeavor to prevent these problems by encouraging normal life experiences and bolstering coping skills, self-esteem, and confidence of children who are chronically ill. Parents must also try to maintain a sense of balance in meeting the needs of their ill and healthy children.

Longer life spans and an aging population have also made elder care a major responsibility of families. The United Nations (1993) reports that the populations of North America, Europe, Asia, and Latin America are aging at approximately equal rates and that by 2025 those age sixty-five and over will number more than 822 million—or about 10 percent of the global population. The bulk of caregiving work performed today is for the elderly, as chronic conditions, disability, and impaired health increase with age. Heart disease, cancer, stroke, arthritis, and dementia cause most chronic illnesses and disability among the elderly. Eighty percent of the noninstitutionalized elderly have one or more chronic health problems (Freund and McGuire 1991; Wagner 1999). Caregiving for elderly often starts out gradually, with family members assisting elders in paying bills, maintaining their homes, shopping, visiting doctors, or other daily living tasks. In many cases, caregiving work expands and becomes more emotionally and physically exhausting as health declines. When the health status of an elderly person dramatically declines, family members usually rally in support by providing care for their loved one. However, there is a tendency for that support to wane over time and for one primary caregiver to be selected by default: usually based on being female, living nearby, and being unemployed (Aneshensel, Pearlin, and Schuler 1993). As few elderly people have young children, most caregiving work falls to those who are middle-aged or elderly. The quality of the relationship between caregiver and care receiver is an important factor in caregiver burden. Caregiving can solidify emotional bonds in close relationships; on the other hand, it may cause longstanding family disagreements to reemerge.

Much research has focused on caregiving for elderly people with dementia, a long-term, degenerative disease that can require extensive and exhaustive care work. Dementia is defined as "disorders involving impairments of memory, intelligence, judgment, and neuropsychology, which are sufficient to inhibit carrying out social activities or work" (Aneshensel et al. 1995, p. 7). Mild levels of dementia affect more than 60 percent of the elderly and, according to Aneshensel and her associates, 4 to 7 percent of the elderly in North America and Europe have moderate to severe levels of dementia. Alzheimer's disease is the most common type of dementia, and caring for its victims can be highly stressful and lead to family dysfunction. In the early stages, family caregivers may recognize that there is a health problem and respond by providing minimal types of assistance. Aneshensel, Pearlin, and Schuler (1993) found that the average caregiver for patients with Alzheimer's disease had been providing care for more than three years before a doctor was consulted. The tendency of individuals with Alzheimer's disease to deteriorate cognitively and physically causes unique caregiving problems. Studies have suggested that cognitive impairment increases strain because it creates an ambiguity in the family boundary: The patient's failure to recognize or emotionally respond to the caregiver creates confusion over whether the patient is in or out of the family system (Boss, Caron, and Horbal 1988). Whatever the strains, caregiving for elderly people is often time-bounded, as serious, degenerative disease among elderly people often leads to death or institutional care.

The notion of "family" caregiving obscures the fact that women do most of the caregiving work. Gender norms that prescribe nurturing and domestic roles for women naturally assign women the responsibility for caring for sick family members at home (Gerstel and Gallagher 1993). In some cultures male caregivers are denigrated: For example, a study of caregiving in South Asian communities found that men who took on the role of caregiver—especially those who quit their jobs to do so—were stigmatized and seen as unworthy of respect (Katbamna, Baker, Ahmad, Bhakta, and Parker 2001). There is also a gender division in the type of work that men and women perform and in their styles of caregiving. Men perform more instrumental tasks for relatives with disability or illness, such as lawn maintenance, lifting, and assisting with financial matters. They also have a more activity-oriented, managerial, and emotionally detached style of caregiving and, when they are the primary caregiver, they receive more help from others in carrying out their tasks (Boss, Caron, and Horbal 1988; Ungerson 1987). Women view caregiving as a duty and obligation and have styles that are more expressive and supportive. They provide more personal service than do men, receive less assistance from others in performing their work, but do have more sources of emotional support. The gendered nature of caregiving work means that the lives of women are more affected than those of men. Caregiving substantially increases the amount of work they perform in the family and may undermine opportunities for employment and other activities.

More recent studies have begun to examine an additional impact of gender on chronic illness: How the sex of the chronically ill or disabled person affects caregiving. For example, in countries where female modesty and chastity are strongly emphasized, caring for sexually mature women can be more difficult than caring for their male counterparts (Katbamna, Baker, Ahmad, Bhakta, and Parker 2001). Parents' caregiving for chronically ill children may also be shaped by gender norms and expectations. Being sick, dependent, or frail is seen as more of a violation of traditional gender norms for men than for women; as Kathy Charmaz (1995, p. 268) has noted, "illness can reduce a man's status in masculine hierarchies, shift his power relations with women, and raise his self-doubts about masculinity." Some research finds that parents see sick sons as more impaired by the illness and less capable of self-care, and that they devote more time and energy to providing care for them (Hill and Zimmerman 1995). Williams (2000) found that boys are more likely than girls to hide their chronic illness, which makes compliance with medical regimens difficult. One mother described her diabetic 15-year old son refusing to do insulin injections at school:

He won't do them [blood sugars] at school now, he absolutely refuses, he won't even do an injection at school. He's on three injections a day and the hospital would like him to go on to four but he won't do it in front of his friends, and he doesn't like the fact that he is diabetic in that respect, he wants to be normal. (Williams 2000, p. 261)

Studies of family caregiving have often focused on caring as burdensome and disruptive to families, especially women, and as a threat to family stability. However, researchers have begun to emphasize the subjective and experiential aspects of caregiving that arise from the meanings assigned to the work (Fisher and Tronto 1990; Traustadottir 1991). Although caregiver work needs to be recognized, it need not be seen as inherently burdensome or unworthy: Rather, caring can be empowering as it enhances the quality of life for chronically ill and/or disabled persons. This may be especially true when there is a close and reciprocal relationship between caregivers and those they care for. Kathleen Theide Call and her colleagues (1999) use a social exchange perspective to point out that dependent and chronically ill people who receive care often reciprocate in a number of ways, and feel uncomfortable when they cannot do so. They found that caregiving is less burdensome when the care receiver is deemed as worthy and the caregiver is a part of the immediate family. The majority of care receivers have not relinquished all their family roles, relationships, and life activities, but rather they continue to participate in and make vital contributions to their families and communities (Parker 1993). As one researcher points out, "People do not become less human, less interesting, or less deserving just because they have unresolvable or disabling conditions. Rather, they continue to learn, to adapt, and to live their lives as well as they can manage. In other words, they seek a state of health that represents their best effort within the specific challenges of the disease" (Thorne 1993, p. 2).

Stress, Social Support, and Coping

Although providing care for chronically ill and/or disabled family members is inherently stressful, several factors mediate the impact of that stress. Family structure, economic resources, social support, and coping resources and strategies all have an impact on the caregiving experience. Family structure may mediate the impact of caregiving for African Americans, who reportedly experience less stress and burden than other racial groups. One study explains this by noting that African Americans rely on a more diverse group of caregivers, including extended family members and close friends (Tripp-Reimer 1997). Economic resources can also influence caregiving work. Patricia G. Archbold (1983) found that affluent caregivers were care managers who used a variety of institutional resources to coordinate their parents' care, whereas low-income women were direct care providers who performed the heavy physical work of nursing care and personal service. Stress is also reduced by the availability of social support; in fact, social support may also ameliorate the physical symptoms of illness and enhance survival. Many types of social support have been examined, but the three most basic types are emotional support, which fosters feelings of comfort; cognitive support, which entails providing information, knowledge, and advice; and material support, the offer of goods and materials ( Jacobsen 1986). Most people expect informal support from their friends and family members, and find such support available and adequate. However, there is a tendency for informal sources of support to be available during acute stages of the illness, such as the diagnosis or terminal stage, but to wane when the illness continues over an extended period of time.

Formal sources of social support are available on a more consistent basis and provide the advantage of talking with experts or people experiencing similar problems. Hospitals, schools, and state and private institutions offer support groups for people with various chronic conditions. These groups provide education about the illness or disability and information about resources available in meeting the daily needs of families. A central theme in support groups is empowerment, which refers to providing chronically ill people and their caregivers with the maximum amount of control over their own lives. Sarah Rosenfield (1992) reported that community resources can enhance the subjective quality of life for persons with chronic illnesses. Evaluating services available for the chronically mentally ill, she found that programs that increase economic resources through vocational training and financial support also increase the status, sense of mastery, and life satisfaction of clients. Findings such as these have led to a growth in the organization of support groups which focus on building family strengths and providing counseling and referral services.

In addition to using social and community resources that enhance coping, chronically ill persons and their families engage in a number of coping activities that mitigate the impact of the illness. Coping has been defined as the things people do to avoid or minimize the stress that would otherwise result from problematic conditions of life (Pearlin and Aneshensel 1986), and coping involves both having resources and using various coping strategies. Coping resources are the psychological and material assets available to individuals and their families in responding to stressful situations. Coping strategies, on the other hand, are the actual behaviors or responses people use in dealing with stressful events. At the individual level, coping resources include one's education, income, self-esteem, sense of mastery, and psychological hardiness, all of which affect one's ability to deal effectively with life strains. Early studies identified integration and adaptability as key family resources (Hill 1954), and other studies have built on this theme. Integration refers to having strong ties of affection, pride in family tradition, and a history of sharing in activities. Adaptability means having flexible social roles, sharing responsibility for performing tasks, and communicating openly. Coping is enhanced when the family does not blame itself for the illness, feels confident in its ability to manage the situation, and continues to be sensitive and responsive to the needs of all family members. Communication and emotional expressiveness, role relationships, available caregivers, and financial resources are all important resources in managing illnesses.

A variety of coping strategies have been identified among persons who experience life strains, including prayer, stoicism, physical activity, denial, withdrawal, and ignoring the problem. The two most common strategies for coping with long-term chronic illness and its debilitating effects, however, are normalization and the attribution of meaning. After the initial impact of the diagnosis of chronic illness wanes, family members are eager to resume their normal lives. Whatever the level of physical or mental impairment caused by the illness, most people do not want the illness to threaten the self-identities, social roles, or activities that they value, or to become the dominant factor in their interactions with others. To avoid this, they attempt to normalize the situation by minimizing the illness and conveying the impression of normalcy to others. One normalizing strategy is to describe behaviors associated with the illness, such as pain, crying, fatigue, forgetfulness, diet changes, and drug therapies, as things that all people experience or engage in from time to time. Parents often make sure that their ill or disabled children participate in as many normal school and household activities as necessary. In some cases chronically ill people invest a great deal of energy in their efforts to manage the impressions and responses of others; they may disguise symptoms, avoid embarrassing situations, or control the information available to others.

The attribution of meaning, a coping strategy that refers to defining the illness in a positive manner, is also an effort to maintain a certain balance in family life. Parents and other family members often view the illness as increasing family cohesion, their patience, and their faith in God or as leading them to develop more meaningful goals and values. Parents may also redefine the expectations they have for their child with chronic illness or disability in a way conducive to maintaining a positive self-image. In a study focusing on preventing mental health problems among children with chronic illness, Joan M. Patterson and Gayle Geber (1991) point out that meanings are at the core of determining whether a disability leads to a handicap, which is a discrepancy between role expectations and actual role performance. The process of definition allows people with chronic illness and their families to endow the illness with meaning.

Although scientific medicine has made progress in treating and managing chronic illnesses, there is little hope that medical interventions will completely eradicate these illnesses. Moreover, the growing elderly population, the prevalence of chronic conditions, the proliferation of medical technologies, and the expectation of virtually unlimited access to medical care has placed severe strains on the health care systems of developed countries. As a result, health authorities are now emphasizing preventive care, healthy lifestyles (e.g., dietary changes, stress reduction, and exercise) as the key to preventing chronic illness, and patients are relying on a broader range healing options such as herbal therapies, acupuncture, and massages. Rather than continuing to focus on finding biophysical/technological cures for every disease, some argue that our attention should be directed toward improvements in primary care and a focus on caring rather than curing. Caring has been defined as "a positive emotional and supportive response . . . to affirm our commitment to their well-being, our willingness to identify with them in their pain and suffering, and our desire to do what we can to relieve their situation" (Callahan 1990, p. 111).

See also:Acquired Immunodeficiency Syndrome (AIDS); Alzheimer's Disease; Anxiety Disorders; Attention Deficit/Hyperactivity Disorder (ADHD); Caregiving; Death and Dying; Depression: Adults; Depression: Children and Adolescents; Dementia; Disabilities; Grief, Loss, and Bereavement; Health and Families; Homeless Families; Hospice; Industrialization; Learning Disorders; Poverty; Respite Care: Adult; Respite Care: Child; Schizophrenia; Stress; Substance Abuse; Substitute Caregivers


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Chronic Kidney Failure

Chronic Kidney Failure


Chronic kidney failure occurs when disease or disorder damages the kidneys so that they are no longer capable of adequately removing fluids and wastes from the body or of maintaining the proper level of certain kidney-regulated chemicals in the bloodstream.


Chronic kidney failure, also known as chronic renal failure, affects over 250,000 Americans annually. It is caused by a number of diseases and inherited disorders, but the progression of chronic kidney failure is always the same. The kidneys, which serve as the body's natural filtration system, gradually lose their ability to remove fluids and waste products (urea) from the bloodstream. They also fail to regulate certain chemicals in the bloodstream, and deposit protein into the urine. Chronic kidney failure is irreversible, and will eventually lead to total kidney failure, also known as end-stage renal disease (ESRD). Without proper treatment intervention to remove wastes and fluids from the bloodstream, ESRD is fatal.

Causes and symptoms

Kidney failure is triggered by disease or a hereditary disorder in the kidneys. Both kidneys are typically affected. The four most common causes of chronic kidney failure include:

  • Diabetes. Diabetes mellitus (DM), both insulin dependant (IDDM) and non-insulin dependant (NIDDM), occurs when the body cannot produce and/or use insulin, the hormone necessary for the body to process glucose. Long-term diabetes may cause the glomeruli, the filtering units located in the nephrons of the kidneys, to gradually lose functioning.
  • Glomerulonephritis. Glomerulonephritis is a chronic inflammation of the glomeruli, or filtering units of the kidney. Certain types of glomerulonephritis are treatable, and may only cause a temporary disruption of kidney functioning.
  • Hypertension. High blood pressure is unique in that it is both a cause and a major symptom of kidney failure. The kidneys can become stressed and ultimately sustain permanent damage from blood pushing through them at an excessive level of pressure over a long period of time.
  • Polycystic kidney disease. Polycystic kidney disease is an inherited disorder that causes cysts to be formed on the nephrons, or functioning units, of the kidneys. The cysts hamper the regular functioning of the kidney.

Other possible causes of chronic kidney failure include kidney cancer, obstructions such as kidney stones, pyelonephritis, reflux nephropathy, systemic lupus erythematosus, amyloidosis, sickle cell anemia, Alport syndrome, and oxalosis.

Initially, symptoms of chronic kidney failure develop slowly. Even individuals with mild to moderate kidney failure may show few symtpoms in spite of increased urea in their blood. Among the symptoms that may be present at this point are frequent urination during the night and high blood pressure.

Most symptoms of chronic kidney failure are not apparent until kidney disease has progressed significantly. Common symptoms include:

  • Anemia. The kidneys are responsible for the production of erythropoietin (EPO), a hormone which stimulates red cell production. If kidney disease causes shrinking of the kidney, this red blood cell production is hampered.
  • Bad breath or a bad taste in mouth. Urea, or waste products, in the saliva may cause an ammonia-like taste in the mouth.
  • Bone and joint problems. The kidneys produce vitamin D, which aids in the absorption of calcium and keeps bones strong. For patients with kidney failure, bones may become brittle, and in the case of children, normal growth may be stunted. Joint pain may also occur as a result of unchecked phosphate levels in the blood.
  • Edema. Puffiness or swelling around the eyes, arms, hands, and feet.
  • Frequent urination.
  • Foamy or bloody urine. Protein in the urine may cause it to foam significantly. Blood in the urine may indicate bleeding from diseased or obstructed kidneys, bladder, or ureters.
  • Headaches. High blood pressure may trigger headaches.
  • Hypertension, or high blood pressure. The retention of fluids and wastes causes blood volume to increase, which in turn, causes blood pressure to rise.
  • Increased fatigue. Toxic substances in the blood and the presence of anemia may cause feelings of exhaustion.
  • Itching. Phosphorus, which is typically eliminated in the urine, accumulates in the blood of patients with kidney failure. This heightened phosphorus level may cause itching of the skin.
  • Lower back pain. Pain where the kidneys are located, in the small of the back below the ribs.
  • Nausea, loss of appetite, and vomiting. Urea in the gastric juices may cause upset stomach. This can lead to malnutrition and weight loss.


Kidney failure is typically diagnosed and treated by a nephrologist, a doctor that specializes in treating the kidneys. The patient that is suspected of having chronic kidney failure will undergo an extensive blood work-up. A blood test will assess the levels of creatinine, blood urea nitrogen (BUN), uric acid, phosphate, sodium, and potassium in the blood. Urine samples will also be collected, usually over a 24-hour period, to assess protein loss.

Uncovering the cause of kidney failure is critical to proper treatment. A full assessment of the kidneys is necessary to determine if the underlying disease is treatable and if the kidney failure is chronic or acute. An x ray, MRI, computed tomography scan, ultrasound, renal biopsy, and/or arteriogram of the kidneys may be employed to determine the cause of kidney failure and level of remaining kidney function. X rays and ultrasound of the bladder and/or ureters may also be taken.


Chronic kidney failure is an irreversible condition. Hemodialysis, peritoneal dialysis, or kidney transplantation must be employed to replace the lost function of the kidneys. In addition, dietary changes and treatment to relieve specific symptoms such as anemia and high blood pressure are critical to the treatment process.


Hemodialysis is the most frequently prescribed type of dialysis treatment in the United States. Most hemodialysis patients require treatment three times a week, for an average of three to four hours per dialysis "run" depending on the type of dialyzer used and their current physical condition. The treatment involves circulating the patient's blood outside of the body through an extracorporeal circuit (ECC), or dialysis circuit. The dialysis circuit consists of plastic blood tubing, a two-compartment filter known as a dialyzer, or artificial kidney, and a dialysis machine that monitors and maintains blood flow and administers dialysate, a chemical bath used to draw waste products out of the blood. The patient's blood leaves and enters the body through two needles inserted into the patient's vein, called an access site, and is pushed through the blood compartment of the dialyzer. Once inside of the dialyzer, excess fluids and toxins are pulled out of the bloodstream and into the dialysate compartment, where they are carried out of the body. At the same time, electrolytes and other chemicals in the dialysate solution move from the dialysate into the bloodstream. The purified, chemically-balanced blood is then returned to the body.

Peritoneal dialysis

In peritoneal dialysis (PD), the patient's peritoneum, or lining of the abdomen, acts as a blood filter. A catheter is surgically inserted into the patient's abdomen. During treatment, the catheter is used to fill the abdominal cavity with dialysate. Waste products and excess fluids move from the patient's blood-stream into the dialysate solution. After a waiting period of six to 24 hours, depending on the treatment method used, the waste-filled dialysate is drained from the abdomen, and replaced with clean dialysate. There are three types of peritoneal dialysis, which vary by treatment time and administration method: Continuous Ambulatory Peritoneal Dialysis (CAPD), Continuous Cyclic Peritoneal Dialysis (CCPD), and Intermittent Peritoneal Dialysis (IPD).

Kidney transplantation

Kidney transplantation involves surgically attaching a functioning kidney, or graft, from a brain dead organ donor (a cadaver transplant), or from a living donor, to a patient with ESRD. Patients with chronic renal disease who need a transplant and don't have a living donor register with UNOS (United Network for Organ Sharing), the federal organ procurement agency, to be placed on a waiting list for a cadaver kidney transplant. Kidney availability is based on the patient's health status. When the new kidney is transplanted, the patient's existing, diseased kidneys may or may not be removed, depending on the circumstances surrounding the kidney failure. A regimen of immunosuppressive, or anti-rejection medication, is required after transplantation surgery.

Dietary management

A diet low in sodium, potassium, and phosphorous, three substances that the kidneys regulate, is critical in managing kidney disease. Other dietary restrictions, such as a reduction in protein, may be prescribed depending on the cause of kidney failure and the type of dialysis treatment employed. Patients with chronic kidney failure also need to limit their fluid intake.

Medications and dietary supplements

Kidney failure patients with hypertension typically take medication to control their high blood pressure. Epoetin alfa, or EPO (Epogen), a hormone therapy, and intravenous or oral iron supplements are used to manage anemia. A multivitamin may be prescribed to replace vitamins lost during dialysis treatments. Vitamin D, which promotes the absorption of calcium, along with calcium supplements, may also be prescribed.

Since 1973, Medicare has picked up 80% of ESRD treatment costs, including the costs of dialysis and transplantation and of some medications. To qualify for benefits, a patient must be insured or eligible for benefits under Social Security, or be a spouse or child of an eligible American. Private insurance and state Medicaid programs often cover the remaining 20% of treatment costs.


End-stage renal disease (ESRD) Total kidney failure; chronic kidney failure is diagnosed as ESRD when kidney function falls to 5-10% of capacity.

Nephrotic syndrome Characterized by protein loss in the urine, low protein levels in the blood, and fluid retention.

Ureters The two ducts that pass urine from each kidney to the bladder.


Early diagnosis and treatment of kidney failure is critical to improving length and quality of life in chronic kidney failure patients. Patient outcome varies by the cause of chronic kidney failure and the method chosen to treat it. Overall, patients with chronic kidney disease leading to ESRD have a shortened lifespan. According to the United States Renal Data System (USRDS), the lifespan of an ESRD patient is 18-47% of the lifespan of the age-sex-race matched general population. ESRD patients on dialysis have a lifespan that is 16-37% of the general population.

The demand for kidneys to transplant continues to exceed supply. In 1996, over 34,000 Americans were on the UNOS waiting list for a kidney transplant, but only 11,330 living donor and cadaver transplants were actually performed. Cadaver kidney transplants have a 50% chance of functioning nine years, and living donor kidneys that have two matching antigen pairs have a 50% chance of functioning for 24 years. However, some transplant grafts have functioned for over 30 years.



American Association of Kidney Patients. 100 S. Ashley Drive, #280, Tampa, FL 33602. (800) 749-2257. http://www.aakp.org.

American Kidney Fund (AKF). Suite 1010, 6110 Executive Boulevard, Rockville, MD 20852. (800) 638-8299. http://www.arbon.com/kidney.

National Kidney Foundation. 30 East 33rd St., New York, NY 10016. (800) 622-9010. http://www.kidney.org.

United States Renal Data System (USRDS). The University of Michigan, 315 W. Huron, Suite 240, Ann Arbor, MI 48103. (734) 998-6611. http://www.med.umich.edu/usrds.

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Chronic Inflammatory Demyelinating Polyneuropathy

Chronic inflammatory demyelinating polyneuropathy


Chronic inflammatory demyelinating polyneuropathy (CIDP) is a disorder that affects the nerves outside of the brain and spinal cord (peripheral nerves). Specifically, the fatty covering, or sheath, that is wrapped around the out-side of a nerve cell is damaged. The covering is called myelin, and the damage is called demyelination. The nerve damage becomes apparent as weakness in the legs and arms increases in severity with time.


The demyelination of peripheral nerves causes a weakness in the legs and arms that grows progressively more severe over time. The ability of the limbs to feel sensory impulses such as touch, pain , and temperature can also be impaired. Typically, the malady is first apparent as a tingling or numbness in the toes and the fingers. The symptoms can both spread and become more severe with time.

The symptoms, treatment, and prognosis of CIDP is very similar to another nerve disease known as Guillain-Barré syndrome . In fact, CIDP has been historically known as "chronic Guillain-Barré syndrome" (Guillain-Barré syndrome is an acute malady whose symptoms appear and clear up more rapidly). Despite their similarities, however, CIDP and Guillain-Barré are two distinct conditions. CIDP is also known as chronic relapsing polyneuropathy.


CIDP can occur at any age. However, the malady is more common in young adults, and in men more than in women. The disorder is rare in the general population.

Causes and symptoms

CIDP is an immune system disorder. Specifically, the immune system mistakenly recognizes the myelin sheath of the peripheral nerve cells as foreign. Damage to the sheath occurs when the immune system attempts to rid the body of the invader. There is no evidence to support a genetic basis for the disease, such as a family history of CIDP or other, similar disorders. CIDP cannot be inherited.

As with Guillain-Barré syndrome, it is strongly suspected that CIDP is at least triggered by a recent viral infection. For example, critical immune cells can be damaged in viral infection such as occurs in acquired immunodeficiency syndrome (AIDS ), leading to malfunction of the immune system. Whether viral or other microbial infections are the direct cause of CIDP is not clear.

CIDP is different from Guillain-Barré syndrome in that the viral infection often does not occur within several months of the first appearance of the symptoms. In Guillain-Barré syndrome, a viral or bacterial infection typically immediately precedes the appearance of the symptoms.

CIDP typically begins with a tingling or prickling sensation, or numbness in the fingers and toes. This can spread to the arms and legs (an ascending pattern of spread). Both sides of the body can be affected; this is described as a symmetrical pattern. Other symptoms that can develop over time include the loss of reflexes in some tendons (a condition referred to as areflexia), extreme tiredness, and muscle ache. In some people, these symptoms develop slowly, reach a peak over several weeks or months, and then resolve themselves over time. However, for the majority of people with CIDP, the symptoms do not improve without treatment, and the symptoms can persist for many months to years.


An important part of the diagnosis of CIDP is the detection of muscle weakness by a neurological examination. One relevant neurological test is nerve conduction velocity. In this test, a patch that is attached to the skin's surface over the target muscle is stimulated. A very mild electrical current stimulates the nerves in the muscle. A measurement called the nerve conduction velocity is then calculated as the time it takes for the impulses to travel the known distance between electrodes.

In demyelinating diseases such as CIDP, the nerves are not capable of transmitting electrical impulses as speedily as normal, myelinated nerves. Thus, the damaged nerves will display a greater conduction velocity than that displayed by an unaffected person.

Another test called electromyography (EMG) is used to measure muscle response to electrical stimulation. In EMG, an electrode contained within a needle is pushed through the skin into the muscle; several electrodes may need to be inserted throughout a muscle to accurately measure the muscle's behavior. Stimulation of a muscle causes a visual or audio pattern. The pattern of wavelengths carries information about the muscle's response. The characteristic pattern of wavelengths produced by a healthy muscle, which is called the action potential, can be compared to a muscle in someone suspected of having CIDP. For a nerve-damaged muscle, the action potential's wavelengths are smaller in height and less numerous than displayed by a normal muscle.

An electrocardiogram can be used to record the electrical activity of the heart when paralysis of the heart muscle is suspected. Nerve damage will alter the normal pattern of the heartbeat.

Finally, an examination of the cerebrospinal fluid by alumbar puncture (also known as a spinal tap) may detect a higher than normal level of protein in the absence of an increase in the number of white blood cells (WBCs). An increase in WBCs occurs when there is a microbial infection.

Treatment team

CIDP treatment typically involves neurologists, immunologists, and physical therapists. Support groups are a useful adjunct to treatment.


The treatments for CIDP and Guillain-Barré syndrome are similar. The use of corticosteroids such as prednisone, which lessen the response of the immune system, can reduce the amount of demyelination that occurs. Corticosteroids can be prescribed alone or in combination with other immunosupressant drugs.

The medical procedure known as plasmapheresis, or plasma exchange, can be another useful treatment. In plasmapheresis, the liquid portion of the blood that is known as plasma is removed from the body. The red blood cells are retrieved from the plasma and added back to the body with antibody-free plasma or intravenous fluid. Although plasmapheresis can lessen the symptoms of CIDP, it is not known exactly why plasmapheresis works. Because the blood plasma withdrawn from the body of a CIDP patient can contain antibodies to the nerve myelin sheath, the subsequent removal of these antibodies may lessen the effects of the body's immune attack on the nerve cells.

Another procedure that produces similar results involves the administration of intravenous immunoglobulin (IVIG). IVIG is a general all-purpose treatment for immune system-related neuropathies. As with plasmapheresis, immunoglobulin may help reduce the amount of anti-myelin antibodies, and so suppress the immune response. As well, IVIG contains healthy antibodies from the donated blood. These antibodies can help neutralize the defective antibodies that are causing the demyelination. When more standard approaches fail, alternative forms of immunosuppressive therapies are sometimes considered, including the drugs azathioprine, cyclophosphamide, and cyclosporine.

Physical therapy is helpful. Caregivers can move a patient's arms and legs to help improve the strength and flexibility of the muscles, and minimize the shrinkage of muscles and tendons that are not being actively used.

Recovery and rehabilitation

Recovery from CIDP varies from person to person. Some people recover completely without a great deal of medical intervention, while others may relapse again and again. Because some people can display permanent muscle weakness or numbness, physical therapy can be a useful part of a rehabilitation regimen.

Clinical trials

The National Institutes of Health (NIH) sponsored four clinical trials for the study and treatment of CIDP, all completed by 2001. The National Institute of Neurological Disorders and Stroke supports continued broad research for demyelinating diseases, although no further clinical trials are ongoing as of March 2004.


A patient's prognosis can range from complete recovery to a pattern of a periodic reappearance of the symptoms and residual muscle weakness or numbness.

Special concerns

The potential exists that IVIG will increase the risk of kidney damage in older or diabetic patients. Enoxaparin, a drug that can be prescribed to reduce the risk of blood clotting in patients with high blood pressure, can make a patient more prone to bleeding. This risk can be greater when enoxaparin is given at the same time as aspirin or anti-inflammatory drugs. The use of corticosteroids can restrict the efficiency of the immune system, which can increase the risk that other microorganisms will establish a secondary, or opportunistic, infection. Medical staff regularly monitor people receiving these treatments for signs of complication.




Comi, G., A. Quattrini, R. Fazio, and L. Roveri. "Immunoglobulins in Chronic Inflammatory Demyelinating Polyneuropathy." Neurological Science (October 2003): S246S250.

Fee, D. B., and J. O. Flemming. "Resolution of Chronic Inflammatory Demyelinating Polyneuropathy-associated Central Nervous System Lesions after Treatment with Intravenous Immunoglobulin." Journal of the Peripheral Nervous System (September 2003): 155158.

Katz, J. S., and D. S. Saperstein. "Chronic Inflammatory Demyelinating Polyneuropathy." Current Treatment Options in Neurology (September 2003): 357364.


NINDS Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Information Page. National Institute of Neurological Disorders and Stroke. December 22, 2003 (March 30, 2004). <http://www.ninds.nih.gov/health_and_medical/disorders/cidp.htm>.


American Autoimmune Related Diseases Association. 22100 Gratiot Avenue, Eastpointe, MI 48201-2227. (586) 776-3900 or (800) 598-4668; Fax: (586) 776-3903. aarda@aol.com. <http://www.aarda.com>.

Guillain-Barre Syndrome Foundation International. P.O. Box 262, Wynnewood, PA 19096. (610) 667-0131; Fax: (610) 667-7036. info@gbsfi.com. <http://www.aarda.org>.

National Organization for Rare Disorders. P.O. Box 1968, Danbury, CT 06813-1968. (203) 744-0100. orphan@rarediseases.org. <http://www.rarediseases.org>.

Neuropathy Association. 60 East 42nd Street, New York, NY 10165-0999. (212) 692-0662 or (800) 247-6968; Fax: (212) 696-0668. info@neuropathy.org. <http://www.neuropathy.org>.

Brian Douglas Hoyle, PhD

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Psychoses, Chronic and Delusional


In psychiatry the term psychosis, first used to refer to mental illnesses in general, was later restricted to the major clinical forms: schizophrenia, chronic and delusional psychoses, and manic-depressive psychoses. Unlike the neurotic, the psychotic subject does not "criticize" the disorders of his or her thought. In 1845 Baron Ernst von Feuchtersleben used the term psychosis to refer to mental illness in his manual of medical psychology. At the end of the nineteenth century, alienists defined psychosis as the loss of reason and mental alienation.

Psychoanalysis seeks less to categorize mental illnesses than to identify their structures and mechanisms. A structural and dynamic definition of psychosis must be conceived on the basis of a primary disturbance of the libido's relationship to reality, through splitting and the reconstruction of an alternative, delusional reality. Eugen Bleuler, influenced by psychoanalysis, characterized schizophrenia as a dissociation of thought through withdrawal into the self, or autism. He posited as its basis splitting, linked to a loosening of associative texture. Skirted around by Sigmund Freud, who preferred the term paraphrenia, the notion of schizophrenia nevertheless became standard within psychiatry and psychoanalysis. A second variety of chronic psychosis, paranoia, is characterized by systematic delusions (delusions of persecution, jealous delusions, erotomania, delusions of grandeur), the predominance of interpretation, and the absence of intellectual deterioration.

In Manuscript H (1894), Freud designated three conditions as psychoses: hallucinatory confusion, paranoia, and hysterical psychosis (which he distinguished from hysterical neurosis). In his texts on the neuropsychoses of defense ("The Neuro-Psychoses of Defence" [1894a] and "Further Remarks on the Neuro-Psychoses of Defence" [1896b]), he took the distinction between neurosis and psychosis as given. From his earliest writings, he undertook to characterize the psychopathology of the psychoses through his successive theories of the psychic apparatus. His only study of a case of psychosis is his commentary on Daniel Schreber's Memoirs of My Nervous Illness. Freud's correspondence with Carl Gustav Jung illustrates the development of Freudian doctrine between 1909 and 1911, and the essays "On Narcissism: An Introduction" (1914), "Fetishism" (1927), and "The Loss of Reality in Neurosis and Psychosis" (1924) show the further elaboration of his theories.

Freud examined the individual's relationship to reality from the vantage point of a consideration of the libidinal cathexes. In the psychoses, the loss of realityand the changed relationship to others following a radical decathexis of the objects of everyday reality ("the end of the world," for Schreber)must necessarily be considered in a way other than descriptive, taking into account the attempted reorganization of reality by the psychotic processes.

All psychoses are characterized by the coexistence of two attitudes: one that takes reality into account, and another that "this same ego, under the influence of the id, withdraws from a piece of reality" (1924e, p. 183). Delusions affirm the subject's belief in the existence of an alternative reality that restores the primitive cathexes that archaically linked childhood awareness with an early love object. The reconstruction of reality in accordance with the "desires" of the id expresses both a defensive cancellation and a reparative force. This entails a process whose psychotic manifestation in no way excludes rearticulation in terms of the mechanisms defined by psychoanalysis. Thus, in Freud's view, hallucinatory psychosis could be considered as the expression of an imaginary maintaining of an early reality whose loss the ego finds unbearable. This theorization requires the refinement of concepts such as regression, which is above all conceived as a function of development of the ego and of the libido: In the one case, regression leads to primary narcissism, and in the other, to hallucinatory wish fulfillment.

Initially, Melanie Klein, like Karl Abraham, tended to base her clinical work on a psychopathological theory of the points of fixation and temporal regression of the libido. In addition to this temporal regression, Freud distinguished a topographical regression that made it possible to compare the mechanisms of dreams with those put into play in psychosis. "In schizophrenia, it is words that become the object of elaboration by the primary process; in the other, the dream, it is the thing-presentations: representations of things to which the words have led." In schizophrenia, circulation is cut off between the preconscious cathexis of words and unconscious thing-presentations. The fundamental mechanism of paranoia is projection. The feeling of hatred toward the object is projected outward and then turned back onto the subject in the form of persecutory hatred.

In the final stage of his work, in describing the splitting of the ego, Freud was on the way to defining an original mechanism of the repudiation of reality in psychosis: denial of the reality of castration. This notion of the Verleugnung (denial) of castration, which he opposed to repression, goes back to the primal experience of loss. Thus, Jacques Lacan, taking up the term Verwerfung (rejection) in his discussion of the "Wolf Man," translated the German Verwerfung as foreclosure and, on the basis of this notion of a primordial excision of a fundamental signifier, elaborated his conceptualization of psychosis. The phallus as the signifier of castration is not inscribed within the symbolic order. Not integrated into the psychotic's unconscious, it returns to the real, especially in the phenomenon of hallucinations. Through Lacan's paternal metaphor, it can be considered that foreclosure of the Name-of-the-Father is the hole in the symbolic that is inherent in all psychoses.

The psychoanalytic elaboration of a theory concerning chronic and delusional psychoses runs up against the difficulty and complexity of a concrete approach. It becomes diversified into a theoretical eclecticism bringing together the considerations through which each school of thought, and indeed each analyst, refines and consolidates the foundations of the transference relationship. For all the intrinsic interest of the original viewpoints of John N. Rosen, Frieda Fromm-Reichmann, Marguerite Sechehaye, Gisela Pankow, Gaetano Benedetti, or Piera Aulagnier, among others, it is impossible to recognize their particular relevance without having access to the specific techniques used in their respective therapeutic approaches.

Through a "psychotic transference" that moves from extreme avoidance to a relationship that is almost one of merging, demands are placed on the analyst that touch his or her own archaic unconscious dispositions; "falling in love-hate" and the preponderance of narcissistic investment over object investment make it difficult to manage. What place does this relationship have within the complexity of medication-based, institutional, or readaptive approaches? Analytic theory must certainly be remembered in a variegated context (families, care-givers, recipients of care) if one wants to maintain a certain structural coherence. José Bleger's notion of framework, Lacan's of historization, and the understanding of transference and counter-transferenceboth individual and institutionalmust always be implemented when the challenge of treating the psychoses is undertaken.

Michel Demangeat

See also : Ego Psychology and Psychosis ; Foreclosure; Historical truth; Hypochondria; Indications and contraindications for psychoanalysis for an adult; Infantile psychosis; Mathilde, case of; Paranoia; Paranoid psychosis; Paraphrenia; Persecution; Psychotic/neurotic; Schreber, Daniel Paul; Symbolization, process of.


Freud, Sigmund. (1894a). The neuro-psychoses of defence. SE, 3: 41-61.

. (1896b). Further remarks on the neuro-psychoses of defence. SE, 3: 157-185.

. (1911c [1910]). Psycho-analytic notes on an autobiographical account of a case of paranoia (dementia paranoides). SE, 12: 1-82.

. (1914c). On narcissism: An introduction. SE, 14: 67-102.

. (1924e). The loss of reality in neurosis and psychosis. SE, 19: 180-187.

. (1927e). Fetishism. SE, 21: 147-157.

. (1974a [1906-13]). The Freud/Jung letters: The correspondence between Sigmund Freud and C. G. Jung (William, McGuire, Ed; Ralph Manheim and R. F. C. Hull, Trans.). Princeton, NJ: Princeton University Press.

Lacan, Jacques. (1966). On a question preliminary to any possible treatment of psychosis. InÉcrits: A Selection (Alan Sheridan, Trans.). New York and London: W. W. Norton.

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Chronic Bacterial Disease

Chronic bacterial disease

Chronic bacterial infections persist for prolonged periods of time (e.g., months, years) in the host. This lengthy persistence is due to a number of factors including masking of the bacteria from the immune system , invasion of host cells, and the establishment of an infection that is resistance to antibacterial agents.

Over the past three decades, a number of chromic bacterial infections have been shown to be associated with the development of the adherent, exopolysaccharide-encased populations that are termed biofilms. The constituents of the exopolysaccharide are poorly immunogenic. This means that the immune system does not readily recognize the exopolysaccharide as foreign material that must be cleared from the body. Within the blanket of polysaccharide the bacteria, which would otherwise be swiftly detected by the immune system, are protected from immune recognition. As a result, the infection that is established can persist for a long time.

An example of a chronic, biofilm -related bacterial infection is prostatitis. Prostatitis is an inflammation of the prostate gland that is common in men over 30 years of age. Symptoms of this disease can include intense pain, urinary complications, and sexual malfunction including infertility. Chronic bacterial prostatitis is generally associated with repeated urinary tract infections. The chronic infection is typically caused by biofilms of Escherichia coli .

A second biofilm-related chronic bacterial infection is the Pseudomonas aeruginosa lung infection that develops early in life in some people who are afflicted with cystic fibrosis. Cystic fibrosis is due to a genetic defect that restricts the movement of salt and water in and out of cells in the lung. The resulting build-up of mucus predisposes the lungs to bacterial infection. The resulting Pseudomonas aeruginosa infection becomes virtually impossible to clear, due the antibiotic resistance of the bacteria within the biofilm. Furthermore, the body's response to the chronic infection includes inflammation. Over time, the inflammatory response is causes breathing difficulty that can be so pronounced as to be fatal.

Another chronic bacterial infection that affects the lungs is tuberculosis . This disease causes more deaths than any other infectious disease. Nearly two billion people are infected with the agent of tuberculosis, the bacterium Mycobacterium tuberculosis. As with other chronic infections, the symptoms can be mild. But, for those with a weakened immune system the disease can become more severe. Each year some three million people die of this active form of the tuberculosis infection.

Tuberculosis has re-emerged as a health problem in the United States, particularly among the poor. The development of drug resistance by the bacteria is a factor in this reemergence.

Beginning in the mid 1970s, there has been an increasing recognition that maladies that were previously thought to be due to genetic or environmental factors in fact have their basis in chronic bacterial infections. A key discovery that prompted this shift in thinking concerning the origin of certain diseases was the demonstration by Barry Marshall that a bacterium called Helicobacter pylori is the major cause of stomach ulcers. Furthermore, there is now firm evidence of an association with chronic Helicobacter pylori stomach and intestinal infections and the development of certain types of intestinal cancers.

At about the same time the bacterium called Borrelia burgdorferi was established to be the cause of a debilitating disease known as Lyme disease . The spirochaete is able to establish a chronic infection in a host. The infection and the host's response to the infection, causes arthritis and long-lasting lethargy.

As a final recent example, Joseph Penninger has shown that the bacterium Chlamydia trachomatis is the agent that causes a common form of heart disease. The bacterium chronically infects a host and produces a protein that is very similar in three-dimensional structure to a protein that composed a heart valve. The host's immune response to the bacterial protein results in the deterioration of the heart protein, leading to heart damage.

Evidence is accumulating that implicates chronic bacterial infection with other human ailments including schizophrenia and Alzheimer's disease. While not yet conclusive, the involvement of chronic bacterial infections in maladies that have hitherto not been suspected of having a bacterial origin will not be surprising.

Research efforts to prevent chronic bacterial infections are focusing on the prevention of the surface adhesion that is a hallmark of many such infections. Molecules that can competitively block the sites to which the disease-causing bacteria bind have shown promising results in preventing infections in the laboratory setting.

See also Bacteria and bacterial infection; Biofilm formation and dynamic behavior; Immunity, active, passive and delayed

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Ear Infections, Chronic

Ear infections, chronic

Chronic ear infection, which is also referred to as chronic otitis media, is a recurring infection of the middle ear that occurs in animals and in humans. In humans, children between a few months of age and about six years of age are the most susceptible. The infection can be caused by bacteria and, occasionally, by viruses .

The ear consists of outer, middle, and inner regions. The outer ear is the visible portion that channels sound vibrations to the middle ear. The middle ear contains three small bones that pass on the vibration to the nerve endings housed in the inner ear. The middle ear is connected to the nasal cavity and the throat by a drainage tube known as the Eustachian tube. Improper drainage from the Eustachian tubes result in a retention of fluid in the middle ear, which can become infected by bacteria.

Such infections are common in children. Each year in the United States, over 10 million children are treated for ear infections. However, ear infections tend to be infrequent and disappear as the construction of the ear changes with age. Specifically, the Eustachian tube becomes more slanted in orientation, which promotes drainage that is more efficient. However, in some children the normally short-term (or acute) middle ear infections begin to recur. For these children, many ear infections can occur in the first six or so years of life. Chronic ear infections affects about two out of every 10,000 people.

In some cases, surgical intervention is necessary to install a plastic drainage tube (a procedure called myringotomy) or to remove infected adenoids or tonsils, which can swell and block the eustachian tube. Myringotomy is one of the most common operations that are performed in the United States. As the ear matures structurally and the eustachian tube acquires the ability to drain more freely, the tube is removed.

As with other chronic bacterial infections, the symptoms associated with chronic ear infections can be less severe and uncomfortable than those of the acute form of the infection. Chronic infections may thus escape detection for long periods of time.

Usually a chronic ear infection is more inconvenient and uncomfortable than a health threat. However, in some cases, the chronic bacterial or viral ear infections can lead to complications that are much more serious. The infection can spread into the bones of the ear. Also, the increased pressure from the build-up of fluid can rupture the eardrum. Such damage can produce permanent impairment of hearing.

Another damaging aspect of chronic ear infections, which is shared with other chronic bacterial infections, is the damage to tissues that results from a prolonged immune response to the infection. The failure to clear the infection can produce a prolonged immune response. This response, particularly inflammation , can be damaging to tissue.

Treatment consists of decongestants or antihistamines to promote drainage through the Eustachian tube, and of antibiotics in the case of a bacterial infection . Even with treatment a chronic infection can take weeks or months to completely clear. Adherence to the treatment schedule is critical, especially since the symptoms of chronic ear infections can pass before the infection is fully cleared. Stopping therapy when the symptoms fade may allow the bacteria that are still surviving to become re-established as another infection. Moreover, because the bacteria were exposed to an antibacterial agent, resistance to that agent can develop, making the recurrent infection harder to eradicate.

See also Bacteria and bacterial infection

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Chronic Illness


A chronic illness is a disease that has a prolonged course, does not resolve spontaneously, and rarely is completely cured. Typical examples include cancer, heart disease, diabetes, and arthritis. These illnesses are usually more common as a population ages. In the United States, as in most developed countries, chronic diseases account for approximately 70 percent of all deaths, and a similar proportion of all health care costs. Recent analyses have shown chronic illnesses to be a more important cause of the burden of disease in developing countries than was previously recognized.

The commonly held belief that chronic illnesses have noninfectious origins has become blurred. A few chronic illnesses, including cervical cancer, liver cancer, and some forms of arthritis, now appear to have infectious causes. Given the large chronic disease burden and the aging population, efforts to reduce the burden, arrest or slow deterioration, and prevent disability from these illnesses will be among the paramount issues in public health for the foreseeable future.

James S. Marks

(see also: Aging of Population; Cancer; Cardiovascular Diseases; Diabetes Mellitus; Epidemiologic Transition; Global Burden of Disease; Noncommunicable Disease Control )


McKenna, M. T.; Taylor, W. R.; Marks, J. S.; and Koplan, J. P. (1948). "Issues and Challenges in Chronic Disease Control." In Chronic Disease Epidemiology and Control, eds. R. C. Brownson, P. L. Remington, and J. R. Davis. Washington, DC: American Public Health Association.

Murray, C. J. L., and Lopez, A. D. (1986). The Global Burden of Disease. Geneva: World Health Organization.

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Chronic Pain


Chronic or persistent pain is defined as pain that lasts for longer than six months. Chronic pain can stem from cancer, illness, injury, or postsurgical changes. Often, persons with chronic pain suffer from syndromes that cannot be confirmed by laboratory tests. These chronic pain syndromes include central pain syndromes, fibromyalgia, headache, lower back pain, myofascial pain syndrome, neuropathic pain, and phantom limb pain. Frequent locations of chronic pain include the back, head, joints, chest, abdomen, and extremities. Chronic pain is common and its sufferers are more likely to have anxiety or depression, have poor perception of their health, decreases in their quality of life, and experience a disruption of their livelihood than those who are not in pain.

In most cases, there is no cure for the chronic pain so treatment is aimed at pain control and rehabilitation. Unfortunately, chronic pain is often ineffectively treated because physicians can be reluctant to prescribe strong, potentially addictive medications. The ineffective pain treatment is compounded by commonly associated conditions such as depression, insomnia, fatigue, and a decrease in general physical functioning. Therefore, treating the pain alone is not sufficient.

The optimal approach to the chronic pain sufferer is an interdisciplinary team that may be comprised of a pain management physician, nurse specialist, psychologist, physical therapist, pharmacist, and vocational counselor. The physician conducts a thorough assessment of the patient and determines the appropriate medical interventions. The psychologist conducts a thorough psychological assessment, educates the patient on techniques to reduce pain, and tends to any associated mental health illnesses. The nurse specialist acts as a case manager and educator. The physical therapist ascertains the patient's physical endurance, flexibility, and strength and conducts the physical rehabilitation process. The vocational counselor identifies and devises strategies to allow the patient to return to work. In addition to dispensing medications, the pharmacist will review past and present use of medicinal agents and educate the patient on the proper use of medications.


In the treatment of chronic pain, drugs (analgesics) are usually administered in a stepwise fashion beginning with mild, relatively safe agents and progressing to stronger agents as necessary. In 1986, the World Health Organization (WHO) proposed a stepwise plan, frequently called the Analgesic Ladder, for the oral treatment of cancer pain. This plan provides adequate pain relief for up to 90 percent of cancer patients but may have limited success for other chronic pain patients. Step one of the ladder is recommended for patients with mild pain and consists of nonopioid analgesics, step two is for moderate pain and consists of mild opioids, and step three is for severe pain and consists of strong opioids. More than one analgesic may be used at a time for an added effect, a procedure called adjuvant therapy.

Nonopioid analgesics consist of acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs). Acetaminophen is an effective analgesic that has a minimal side effect profile. Nonsteroidal anti-inflammatory drugs have both analgesic and anti-inflammatory properties. Examples of nonsteroidal anti-inflammatory drugs are aspirin, ibuprofen, naproxen, meclofenamate, piroxicam, and more recently celebrex and vioxx. Major side effects associated with the use of nonsteroidal anti-inflammatory drugs include kidney toxicity, bleeding disorders, and stomach disorders.

Opioid analgesics are available in different strengths. Examples of opioid analgesics are morphine, fentanyl, methadone, and meperidine. The side effects of opioids may be much more serious than those seen with nonopioid analgesics. Side effects include respiratory depression, alterations in consciousness (e.g. drowsiness, sedation, confusion), nausea, vomiting, constipation, urinary retention, and itching.

Other medications used in the treatment of chronic pain include antidepressants and anticonvulsants. Nerve blocks, injection of anesthetics into trigger points, or injection of steroids into the epidural space of the spinal cord may also be utilized. Implantable methods are utilized as treatments of last resort. These methods involve implanting drug delivery systems or electrodes into specific areas of the spinal cord.


The continued use of opioids leads to tolerance, in which increasingly higher doses of drug must be used to obtain the original level of pain relief. Tolerance develops slowly, occurring over a period of months to years. Cross-tolerance to other opioids develops, although to a lesser extent. Tolerance can be differentiated from physical dependence and addiction.

Physical dependence is a characteristic of opioid use because of the mode of action. It reflects a state of neurological adaptation to the drug. With physical dependency, discontinuation of opioid use leads to withdrawal symptoms (e.g. sweating, tearing, rapid heart rate, nasal discharge, abdominal cramps, nausea, and vomiting). To prevent withdrawal symptoms, patients on long term opioid use are gradually weaned off the medication. Physical dependence on opioids does not lead to addiction, although it may compel the patient to seek opioids to relieve symptoms of withdrawal.

For chronic pain patients taking opioids, tolerance and physical dependence are not indicators of addiction. Addiction is not a characteristic of opioid use, rather, it is dependent upon the user. In fact, the medical use of opioids is only very rarely associated with addiction. The agonist-antagonist class of opioids (buprenorphine, butorphanol, nalbuphine, pentazocine, and dezocine) has a low abuse potential.

Any patient taking opioids to treat chronic pain can meet the criteria for addiction set forth by the American Psychiatric Association in the Diagnostic and statistical manual of mental disorders: DSMIV. Therefore, it is very difficult to diagnose addiction in chronic pain patients who are taking opioids. Chronic pain patients who are being ineffectively treated could display the drug-seeking behavior that is characteristic of addiction, a phenomenon called pseudoaddiction . Alternatively, the patient receiving effective pain treatment may take extreme measures to insure an adequate supply of medication. This behavior is termed therapeutic dependence .

Suggestive signs of addiction within the context of opioid therapy for chronic pain include:

  • Loss of control over opioid use;
  • Preoccupation with the use of opioids despite adequate pain control; and
  • Continued use of opioids even with their adverse consequences.


Ashburn, M.A. & Rice, L. J. (1998). The Management of Pain. New York, NY: Churchill Livingstone.

Ashburn, M.A. & Staats, P. S. (1999). Management of chronic pain. Lancet, 353, 1865-1869.

Gallagher, R.M. (ed.) (1999). The medical clinics of North America: Chronic pain. Philadelphia, PA: W. B. Saunders Company.

Belinda Rowland

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ROWLAND, BELINDA. "Chronic Pain." Encyclopedia of Drugs, Alcohol, and Addictive Behavior. 2001. Retrieved May 26, 2016 from Encyclopedia.com: http://www.encyclopedia.com/doc/1G2-3403100112.html

Chronic Illness

Chronic Illness

What Is Chronic Illness?

What Are Different Types of Chronic Illness?

How Is Chronic Illness Treated?

Coping with Chronic Illness


A chronic illness is a mental or physical disorder that lasts for a long time, perhaps even a lifetime.


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Crohns disease

Diabetes mellitus




Genetic disease



Sickle-cell anemia

What Is Chronic Illness?

Chronic (KRAH-nik) illnesses are different from illnesses such as flu or chicken pox, where a person becomes sick for a short time and then returns to health. These short-term illnesses are called acute (a-KYOOT) illnesses. Unlike people with acute illnesses, people with chronic illnesses usually dont return to completely normal health. The illness does not go away, even when the symptoms are controlled.

What Are Different Types of Chronic Illness?

There are many types of illnesses that are chronic, each with its own symptoms, causes, and course. Some chronic illnesses affect people of any age or ethnic background, while others are more likely to appear in a particular age or ethnic group. Some chronic illnesses are present at birth, while others develop later in life. Chronic illnesses are sometimes inherited. Diseases that are inherited develop because a person has certain genes, the material in the body that helps determine physical and mental characteristics, such as hair and eye color. An example of an inherited chronic illness is sickle-cell anemia. This disease affects the bloods ability to carry oxygen through the body. Sickle-cell anemia is more likely to occur in people of African descent who carry the gene for the disease. Sometimes the symptoms of inherited chronic illnesses appear early in childhood. At other times, symptoms of an inherited chronic illness do not show up until much later in life.

Some chronic illnesses are caused by environmental factors such as exposure to pollutants. Coal miners may breathe so much coal dust in the air that they begin to show symptoms of a chronic lung disorder called black lung disease. Bacteria* or viruses* also can cause chronic illnesses. For example, Lyme disease, a bacterial disease spread by the bite of ticks, causes an acute flulike illness at first, but it also can cause long-term joint, heart, and nervous system problems that may not show up for months or years. Some chronic illnesses are progressive. Progressive illnesses such as muscular dystrophy*, cystic fibrosis*, multiple sclerosis*, Parkinson disease*, or Alzheimer disease* can get worse as time passes.

* bacteria
are round, spiral, or rod-shaped single-cell microorganisms without a distinct nucleus that commonly multiply by cell division. Some types may cause disease in humans, animals, or plants.
* viruses
are tiny infectious agents that lack independent metabolism (me-TA-bo-li-zum), the chemical processes by which living things produce and use energy. Viruses can reproduce only within the cells they infect.
* muscular dystrophy
(DIS-trofee) is a group of inherited disorders in which there is a gradual deterioration and weakening of muscles.
* cystic fibrosis
is an inherited condition in which certain glands produce very sticky mucus (MYOO-kus) that clogs the lungs, the intestines, and some other organs of the body, making it difficult to breathe and digest food properly.
* multiple sclerosis
is an inflammatory disease of the nervous system that disrupts communication between the brain and other parts of the body, that can result in weakness, paralysis, blindness, and other symptoms.
* Parkinson disease
is a disorder of the nervous system that causes shaking, rigid muscles, slow movements, and poor balance.
* Alzheimer (ALTS-hy-mer) disease
is a condition that leads to gradually worsening loss of mental abilities, including memory, judgment, and abstract thinking, as well as changes in personality.

How Is Chronic Illness Treated?

When doctors diagnose a chronic illness, they also recommend treatments that can relieve symptoms or keep the body functioning at its healthiest. Sometimes treatments involve medications the doctor will prescribe. Sometimes managing the illness also will depend on things the ill person can do to remain as healthy as possible, such as making changes in diet, quitting smoking, or exercising more. People with chronic illness seem to do best when they work as partners with their doctors to take an active role in caring for their health.

The symptoms of many chronic illnesses can be controlled with medication or changes in diet and activity. For example, people with diabetes (dy-a-BEE-teez) are unable to process sugars properly for use by the body. By taking insulin* or other medications and by eating properly, people with diabetes can lead very active, normal lives. Bobby Clarke, who played professional ice hockey for many years, is an example of a person with diabetes who has had a vigorous and demanding career, even though he takes insulin every day.

* insulin
is a kind of hormone, or chemical produced in the body, that is crucial in controlling the level of glucose (sugar) in the blood and in helping the body use glucose to produce energy. When the body cannot produce or use insulin properly, a person must take insulin or other medications.

Some people with chronic illnesses have symptoms that appear only under certain conditions. For example, some people with asthma (AZma), a chronic illness that affects the lungs, may experience difficulty breathing only when they exercise, breathe in pollutants, or are under stress. Others with asthma may need to take medications or use inhalers daily to prevent wheezing. When the symptoms of a chronic illness are not present or are minimal, the illness is said to be in remission (ree-MI-shun). Having an illness that is in remission is not the same as being cured, because the disease that causes the illness is still present.

Coping with Chronic Illness

Accepting that one must live with the limitations of a chronic illness can be emotionally difficult. How people react to the diagnosis of a chronic illness and how they cope depend partly on the nature of the illness, and the age and resilience of the person. The changes they believe the illness will make in their lives, and how the illness will change their family and social support, also influence how people cope. Many people go through a process of grieving for the health and freedom of activity that they have lost. They may pass through stages of denial, anger, depression, and worry when they find out that they have a chronic disease.

Self-image and self-esteem may suffer when a person must cope with a chronic illness, especially if that illness is painful or imposes limitations that interfere with social activities, school, or work. Chronic illness may be difficult for other family members, who frequently must take on additional responsibilities at home. Many chronic illnesses may get better or go into remission, only to reappear unexpectedly, sometimes with worse symptoms. Uncertainty about the course of the illness can be stressful. This uncertainty also may make planning for vacations or special activities difficult.

Support groups dedicated to specific illnesses are often effective in helping the person with a chronic illness and that persons caregivers make emotional and physical adjustments to the disease. Counseling and therapy for both the chronically ill person and caregivers or family members may help people find ways of dealing with the stress of chronic illness. Many people with chronic illness, even children, cope well with their condition and find ways of adjusting to their disease and leading full and meaningful lives.

See also







Huegel, Kelly. Young People and Chronic Illness: True Stories, Help, and Hope. Minneapolis: Free Spirit Publishing, 1998. True stories about teens with asthma, diabetes, lupus, hemophilia, Crohns disease, and epilepsy, and strategies for how to cope with chronic illness.

Kaufman, Miriam. Easy for You to Say: Q and As for Teens Living with Chronic Illness or Disability. Toronto: Key Porter Books, 1995.


Center for Disability Information and Referral, Indiana Institute on Disability and Community, 2853 East Tenth Street, Bloomington, IN 47408-2696. This organization focuses on the disability aspect of chronic illness. It provides referrals for all types of disabilities. Telephone 812-855-9396 http://www.iidc.indiana.edu/~cedir

KidsHealth website has much valuable information for children, teens, and parents. Articles on muscular dystrophy, diabetes, and coping with chronic illness are available at their website. http://www.KidsHealth.org

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"Chronic Illness." Complete Human Diseases and Conditions. 2008. Encyclopedia.com. 26 May. 2016 <http://www.encyclopedia.com>.

"Chronic Illness." Complete Human Diseases and Conditions. 2008. Encyclopedia.com. (May 26, 2016). http://www.encyclopedia.com/doc/1G2-3497700096.html

"Chronic Illness." Complete Human Diseases and Conditions. 2008. Retrieved May 26, 2016 from Encyclopedia.com: http://www.encyclopedia.com/doc/1G2-3497700096.html

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