Sickle Cell and Its Effects on African Americans - Dissertation Example

Sickle Cell and Its Effects on African Americans Introduction Identifying the effect of sickle cell disease (SCD) on the lives of African Americans who have the illness is an important task. A serious public health concern, SCD is mostly prevalent among African Americans in the United States. Thus, sickle cell disease is a severe health issue for African Americans. Its symptoms become apparent during early childhood and normally results in a problematic childhood and greater possibility of shorter life expectancy.1 This essay discusses sickle cell disease and its effect on African Americans in the United States. Overview of the Sickle Cell Disease Sickle cell disease is defined as a set of genetic illnesses where in the sickling of red blood cells (RBC) brought about by oxygen deficiency makes the cells look like a sickle and leads to the disruption of the smaller circulatory functioning of the body and chronic anemia. SCD, similar to numerous other illnesses with an extensive chronic pain element, has currently been regarded as existing simultaneously as the outcome of behavioral, psychosocial, and biological components.2 In the United States, SCD mostly affects African Americans. Those who have SCD have a less chance of surviving beyond their twenties, and until recently a small number of individuals with the illness survived past their forties.3 Sudden, irregular, and sometimes fatal complications typify the progression of SCD. Akin to people with the same chronic illnesses, these discrepancies are found to have a major effect on the social, psychological, and biological development these people. Until now there is no definite knowledge of when the sickle cell disease was first described or reported. Early civilizations were unaware of the cause of SCD. But they witnessed children going through the agonizing illness. SCD is more widespread in Africa than on any other parts of the world. Many infants with SCD died due to lack of medical attention and care. Until the early twentieth century, nearly all children who had SCD died early. Physicians rarely saw children with the illness. If they saw one, they were unaware that this illness was distinct from other widespread illnesses.4 The symptoms of SCD usually resemble the symptoms of other tropical illnesses. In 1846, R. Lebby--an American physician-- gave the earliest report on SCD in his essay ‘Case of Absence of the Spleen’. Lebby had examined the spleen—‘a large organ in the body that stores blood and destroys old red blood cells’—of a deceased African American slave.5 He discovered that the spleen of the African American was missing. He reported this discovery and other medical observations. Medical concern for SCD began in 1910 when Dr. James B. Herrick wrote an article about the illness. Twenty-year-old Walter Clement Noel consulted Herrick about his condition. Herrick decided to examine the patient’s blood. He saw several strange conditions. He saw red blood cells that were shaped like a sickle.6 Herrick called these unusual red blood cells ‘sickle-shaped’ cells. Today, knowledge about the sickle cell disease and the process of sickling is comprehensive. Nevertheless, specialists have not yet created a treatment for the illness that this sickling generates—sickle cell anemia. SCD is a serious issue because a large number of individuals have it. Although majority of genetic illnesses affect only a few people, the number of individuals with sickle cell anemia is relatively big. SCD can be found in almost all parts of the world, but it occurs mostly in the Caribbean Islands, South and Central America, Greece, the United States, and Africa.7 There are two types of sickle cell disease: mild or severe. An individual with a mild SCD seldom experiences any complications from the illness, whereas a person with a severe SCD is normally incapacitated, experiences bouts of life-threatening complications, and has a smaller chance of surviving into adulthood. Individuals with a mild SCD have the sickle cell characteristic, which is genetically passed on from one parent. Individuals with a severe SCD, on the other hand, inherited the characteristic from both their parents.8 Roughly two-thirds of individuals with SCD experience intermittent painful episodes that are assumed to be due to damage to the tissue caused by the disruption of the flow of blood by the sickled cells. Exposure to intense temperature, lack of body fluids, fever, and infection may trigger these painful episodes. Furthermore, physical fatigue, depression, and anxiety may trigger a painful episode. Roughly 10 percent of individuals with SCD suffer from leg ulcers.9 There is no specific treatment for SCD thus far. The identification of major behavioral effects on the symptoms and management of pain crises caused by SCD has resulted in the growth and application of a number of behavioral treatments. As a result, proper management of the disease involves therapy or counseling to help people with the disease understand their condition and how to effectively cope with it.10 For instance, individuals with SCD are advised to look for deskbound or stationary jobs and those that provide premium healthcare privileges. Basically, the management of SCD includes medical attention between and during crisis episodes, vocational assistance, social services, counseling, and education. Besides genetic therapy, patients usually need psychological therapy to lighten their depression about their condition.11 Depression and other similar emotions can worsen their condition. The management of painful episodes normally involves pain relief, hydration, and the diagnosis and treatment of any related or stimulating factors. A current investigation has reported that the clinical management of sickle cell episodes may in fact lengthen the life of individuals with SCD. In this study of a large number of patients with SCD, researchers discovered that the frequency of pain is an indicator of the intensity of the illness as it relates to the number of fatalities among patients aged 20 and above. 12 Therefore, treatment to lessen the frequency of pain crises will lengthen their lives. Because no conclusive and exact treatment for SCD is presently available, several new treatments have been formulated. A particular new treatment that has started to show much potential is the drug hydroxyurea, which is generally used in the management of leukemia. In initial investigations this drug has been reported to moderate anemia and reduce the painful episodes related to the illness.13 This new medication can potentially impact the illness itself instead of merely the symptoms. Such developments guarantee the possibility of effective treatment of sickle cell disease. Effects of Sickle Cell Disease on African Americans An African American woman living with sickle cell disease admitted that the illness make her life overly miserable. A lot of African Americans in the United States who have SCD argue that it is vital to raise awareness about the illness in order to cope with it successfully. African Americans with SCD have to confront habitual disruptions to their daily lives due to the problems related to the disease. Such disruptions usually weaken an individual’s self-perception, increase the likelihood of overdependence on other people, and make social relationships risky.14 African American families may also confront major problems as they provide care for a member who has SCD. The experiences of SCD-afflicted African Americans in the United States are associated with broader political and theoretical perspectives. Many of the issues characterizing sickle cell disease among African Americans can simply be understood with regard to broader issues like chronic disease, ethnicity, and family responsibility. This improves current discourses about SCD by offering a broader perspective to understand the experience of African Americans living with the disease. Living with sickle cell disease has shares commonalities with other kinds of chronic disease and disability. Nevertheless, there is a political and theoretical conflict between disability and chronic disease. Chronic disease is described as a stable condition with bouts of serious infirmities, while disability is frequently described in relation to mental or physical dysfunction.15 In reality, though, this differentiation is usually hard to sustain. For instance, SCD can be regarded as a chronic disease with disabling outcomes. Considering this fact provides an important basis for understanding the politics of SCD and the particular experiences of individuals with the disease. Sickle cell disease has attributes believed to be specific to a chronic disease. These involve unpredictability, medical outcomes which lead to intermittent crisis and stable condition, and the necessity of uninterrupted and permanent clinical monitoring and treatment to reduce the effects of the illness. As expected, SCD affects the everyday lives, self-perception, and social interactions/relationships of African Americans who have the disease, weakening their ability to carry out tasks considered as normal.16 (Anionwu 70-71) In relation to this, disease is a stressor and research on SCD offers a logical perspective, which can provide greater understanding of the experiences of individuals with the disease. When individuals talk about their disease it becomes apparent that their experiences of disease are intertwined into life histories, illustrating their life experiences. This disease narrative provides expression to the efforts of African Americans with SCD to cope with their life circumstances. Many of the difficulties confronted by African Americans with SCD and their families are socially fabricated and are relevantly interpreted within the wider perspective of disadvantage, inequity, and discrimination confronted by these African Americans in the United States.17 Due to this, a number of SCD-afflicted African American advocates consider the disease as an impairment and demand for stronger affiliations with major disabled groups. For example, the larger society generally considers SCD as an individual misfortune and disregards the indications that the disadvantages confronted by African Americans with the disease are socially constructed. Consequently, experiences of individuals with SCD are marginalized within the medical literature. This is a widespread kind of prejudice confronting SCD-afflicted individuals and a vital factor in the struggle for fair representation. The supremacy of medical perspectives usually alienates a person from their own identity and body and represents the disease narrative. This implies that the person can find him/herself prohibited from making decisions for their own lives and their opinions are taken for granted in discourses about how their disease is managed or treated.18 As an aspect of living with sickle cell disease, individuals have to handle the reaction of the established institutions in the larger society. For instance, educational organizations may not be able to cater to the outcomes of sickle cell disease. Moreover, individuals with SCD may find themselves barred from several occupations and social activities, and suffer from intolerance or discrimination in their transactions with financial institutions (e.g. insurance firms).19 This becomes a source of social segregation and prejudice, and another crucial political struggle for individuals with SCD. It is important to take into account the case of employment thoroughly as employment discrimination is at the core of the experiences of African Americans with SCD. In western countries, the labor force serves a vital function in constructing an individual’s identity and provides financial resources.20 Employment is an essential part of adulthood and difficulties entering the labor force are often related to patterns of difficulties in other domains of life. For example, financial difficulties can trigger psychological and emotional distress. On the contrary, a rewarding and satisfying working life can strengthen self-worth and self-esteem as well as make up for difficulties in other domains of life. Yet, African Americans with SCD experience difficulties acquiring financially worthwhile and satisfying employment because the beliefs of some employers share the larger society’s unawareness, intolerance, and failure to embrace diversity. Individuals with SCD confront these prejudices and disadvantages.21 The difficulties they face are exacerbated by the wider discrimination confronted by members of minority ethnic groups within the employment sector. The unavoidability of infrequent absences is a specific problem confronted by individuals with SCD in attaining a secured employment status. This is still a serious problem for individuals with SCD. Nevertheless, it is essential that possible barriers to employment are regulated and reduced.22 Whitten and Fischoff argued: The disease also imposes a sense of insecurity, for adults are quite aware that sickle cell anemia may result in disqualification for a job or a dismissal after hiring. Because of the role of work and self-sufficiency in the development of the individual’s social identity, any factor that works against the acquisition and retention of a meaningful job has the potential for undermining or destroying a previously good psychosocial adjustment.23 Therefore, a more accommodating and responsive employment plan for individuals with SCD could promote an effective coping mechanism, or reduce feelings of hopelessness, poor self-perception, and overdependence. Sickle cell disease is an unpredictable illness, being informed of the different complications that can arise and what stimulates these complications can help reduce pain crises associated with SCD. The larger society should be educated about SCD and its actual effect on the lives of those affected by it. Therefore, in order to cope effectively with the illness there should be a stable and useful support mechanism. A support mechanism that is composed of loved ones (e.g. members of the family, relatives), friends, a healthcare group specifically trained in SCD, and other individuals affected by the illness is an effective means toward a long, fruitful life.24 A strong support mechanism can assist people with SCD in making sure their lives have a sense of direction, purpose, and accomplishment. Discussion and Conclusion This essay discussed the nature and effect of sickle cell disease on African Americans in the United States. Throughout the discussion, individuals with SCD, as well as their families are characterized as involved actors fighting against prejudices, intolerance, and discrimination in the larger society. African Americans who have SCD obviously need empowerment, and this empowerment should emanate from the above idea. People with SCD and their families are quite resourceful, making use of a variety of techniques and resources in coping with and surpassing the problems and barriers related to their disease. Social service and healthcare institutions should acknowledge this and contribute to the enhancement of the strengths by providing assistance and a support mechanism that allows the person with SCD and their families to successfully manage or deal with their disease. A greater awareness of the issues and hardships people with SCD and their families confront builds a foundation for creating effective support mechanisms. Moreover, numerous of the difficulties experienced by people with SCD and their families are an outcome of how the disease is viewed by the larger society. They put up with disadvantages and prejudices because of the failure of the larger society to integrate people who are not part of the ‘mainstream’ population. This discrimination is extensively discussed in racist literature, which additionally promotes the inferior status of people with SCD. Thus, policies are needed to correct and improve broader knowledge of sickle cell disease and make sure that formal institutions, such as educational and financial organizations, do not single out individuals with SCD. Prejudices prevent people with SCD from acquiring social prospects to use and improve their abilities. Efforts to surpass these difficulties indicate potential associations with disability institutions accommodating people with SCD and other chronic diseases. More broadly, racial discrimination informs them that people with SCD, particularly African Americans, are entangled into the larger battle of minority ethnic groups. Bibliography Adams-Grave, P. et al. “Sickle-Cell Hospital Unit: A Disease-Specific Model.” Journal of Healthcare Management 53, no. 5 (September-October 2008): 305+ Anderson, N. Encyclopedia of Health and Behavior. Thousand Oaks, CA: SAGE, 2004. Anionwu, E.N. & Karl Atkin. The Politics of Sickle Cell and Thalassaemia. Philadelphia: Open University Press, 2001. Bloom, M. Understanding Sickle Cell Disease. Mississippi: University Press of Mississippi, 1995. Burnes, D.P.R. et al. “Mothers Raising Children with Sickle Cell Disease at the Intersection of Race, Gender, and Illness Stigma.” Health and Social Work 33, no. 3 (August 2008): 211+ Darity, W. Sr. et al. Health and Medical Care of African-Americans. Westport, CT: Auburn House, 1993. Hill, S. Managing Sickle Cell Disease: In Low-Income Families. New York: Temple University Press, 2003. Peterson, J.M. Sickle Cell Anemia. New York: The Rosen Publishing Group, 2008. Plasmar, R. Focus on Sickle Cell Research. New York: Nova Publishers, 2004. Wailoo, K. Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health. North Carolina: UNC Press Books, 2001. Read More