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Social Implications of Medical Issues Essay Systemic Lupus Erythematosus (SLE) is an autoimmune disease that is primarily a disease of young women. The disease has a wide array of manifestations and can be fatal. SLE produces antibodies to the body’s own cells leading to full-body inflammation and tissue damage. The causes of the disease are unknown but have been linked to genetic, environmental, and hormonal factors. A patient with SLE may experience times of extreme illness and full remissions. The disease can affect joints, skin, brain, lungs, kidneys, and blood vessels. Common signs and symptoms of SLE are fatigue, pain or swelling in joints, skin rashes, and fevers. Multiple providers are required in treating lupus due to the number of organ systems and body areas involved. A diagnosis of SLE impacts hundreds of thousands of people each year. A diagnosis of SLE can impact a patient’s life physically, emotionally, and financially. There are numerous campaigns and programs available for those that have been diagnosed from self-management education of the disease and it’s symptoms to physical activity programs to improve the health and endurance of the patient. These programs offer evidence based interventions to help minimize the impact of SLE on a patient’s life. There are also numerous research efforts of the disease for the health care providers in better treatment of the disease and for the patient’s in coping with the signs and symptoms. The medical description of Systemic Lupus Erythematosus is an auto-immune disease of un-known cause. The disease affects multiple organs and causes multiple systemic symptoms. It is a very unpredictable disease; it can progress quickly or slowly and the experienced symptoms vary from patient to patient. The disease has no cure and may result in early death. Patients can live years in remission and manage their flare-ups with medications and medical care management. Falvo states that for patients, â€Å"The goal is to improve or maintain organ function and to prevent permanent organ damage. † (2009) The disease is not easily diagnosed. These patients tend to be young females and are more apt to be African American. The Lupus Foundation states on their website that, â€Å"Because many symptoms of systemic lupus erythematosus (SLE) mimic those of other illnesses, lupus can be a difficult disease to diagnose. (2012) Laboratory tests in combination of the patient’s physical signs and symptoms is how the disease of SLE. It is not common to make a diagnosis immediately. The Lupus Foundation also states on their website that, â€Å"More often than not it is a diagnosis that evolves over time, leading towards more certainty that a person does or does not meet the criteria for a diagnosis of lupus. (2012) The American College of Rheumatology (ACR) developed a list of 11 common measures to assist is the diagnosing of SLE. According to the ACR if a patient is currently experiencing or has experienced at least four from the list there is a strong chance that the patient has lupus. Some of the most common and apparent symptoms that the patients experience are â€Å"butterfly† rashes (over the nose and cheeks) and joint discomfort. Another common symptom that is experienced is chronic and extreme fatigue. The ACR gives a comprehensive list of the symptoms including, rash, photosensitivity, oral ulcers, arthritis, serositis (inflammation of the linings around the heart and lungs), kidney disorder, seizures, anemia and a compromised immune system. Patients with SLE may also experience fevers over 100 ° F and hair loss. The impact on the body areas and organ systems is a slow process but, is very destructive. Being that systemic lupus erythematosus is an auto-immune disease that creates antibodies against the bodies own cells and causes inflammation and tissue damage. It has an impact on the body as a whole and is eventually fatal. The number of cases each year is, â€Å"†¦difficult to obtain because onset is difficult to determine (non-specific symptoms and signs) and the required, resource-intense studies are done in small areas. (CDC, 2012) It is also stated that case estimates range from 1. 8 to 7. 6 per 100,000 people in various parts of the United States. Systemic lupus erythematosus has a high mortality rate when compared to other rheumatic type conditions. The Centers for Disease Control and Prevention lists on their website, â€Å"From 1979 to 1998, the annual number of deaths with lupus as the underlying cause increased from 879 to 1,406. Crude death rates increased with age (35% were in 15-44 year age group), among women (5x higher than in men), and among blacks (3x higher than in whites). Death rates were highest and increased the most over time among black women aged 45-64 years. † (2012) The deaths mainly occurred when a patient was experiencing active disease and went into organ failure. Usually, failure of the kidneys and/or the heart were the main contributors to the deaths. The treatments can often result in extreme side effects. A common treatment involves the use of immunosuppressive drugs that may cause reproductive issues. This often causes compliance issues with the treatment plans and exacerbation of symptoms. Psychosocial challenges that patients with systemic lupus erythematosus experience come into effect at different stages of the disease. Patients with SLE often do not have apparent symptoms that can be seen by others. The Lupus Foundation states, â€Å"†¦because you may not have any visible signs of disease, the people around you may not realize how much discomfort and pain you are experiencing, or they may not know that you are sick at all. † (2012) That makes it difficult for patients to explain that they are ill or to receive the needed support from family, friends and co-workers. After the initial diagnosis, people surrounding the patient may be supportive but, as time goes by, those people may show annoyance and/or irritation to symptoms of fatigue and pain. There is also fear experienced by the family that they will lose their loved one to the disease. This can cause overly pampering and tiptoeing around the family member with systemic lupus erythematosus. This need for extra care can also cause feelings of guilt in the patient because the life that they and their family used to know has been adjusted around their condition. Spouses tend to have a very difficult time because the intimacy that was once shared can change dramatically. The patient’s self-esteem and body image can be challenged due to symptoms of skin rashes and lesions, hair loss and weight gain. Other symptoms such as joint pain and genital sores can cause intercourse to be painful. According to The Lupus Foundation, â€Å"if the frequency and pleasure of intimacy and sex fade, the partner without lupus may feel hurt and confused, or even resentful and angry. (2012) This would make it frustrating for both partners because the relationship that had been is now something very different. Patients with systemic lupus erythematosus are often able to continue working. The Americans with Disabilities Act passed in 1990 has helped many patients diagnosed with debilitating conditions. The Lupus Foundation comments that, â€Å"Many people with lupus are able to continue to work, although they may need to make changes in their work environment. Flexible work hours, job-sharing, and telecommuting may help you to keep working. It may be helpful to begin to make such arrangements soon after you have been diagnosed with lupus. † (2012) The fatigue and hospitalizations are the symptoms that would effect work attendance more than other symptoms of the disease. There are successful community based programs developed for patients with SLE. Self-management education is on the most important areas to focus on with any chronic condition. Teaching patients to be compliant and an active participant in their own care is extremely important in the success of the treatments. The availability of the internet has allowed patients to educate themselves and research treatments and be actively involved in support groups. The positive impact of self-education is shown in the improvement of treatment outcomes and those diagnosed with SLE are able to live longer and more normal lives. According to The Lupus Foundation, â€Å"We now know more about lupus than ever before. Dedicated researchers are on the brink of significant breakthroughs in the underlying science of the immune system, while public awareness and understanding continue to grow. Improvements in diagnosis, a greater understanding of how medications can work together to control symptoms, and increased knowledge of the effects of the disease have allowed better management of lupus over time. Today people with lupus are leading healthier lives and living longer than at any time in history. † (2012) According to the CDC, â€Å"Long gone are the days when health care providers told people with arthritis to â€Å"rest their joints†. 2012) Physical activity programs have become a very important part of treatment plans that providers put in place for their patients with SLE. Increasing strength and stamina has shown to improve the body’s ability to adjust to arthritis and joint conditions. Building up cardiovascular strength and muscle strength also helps with pain control. The CDC also states, â€Å"Scientific studies have shown that participation in moderate-intensity, low-impact physical activity improves pain, function, mood, and quality of life without worsening symptoms or disease severity. (2012) Patients with SLE tend to experience the most pain from joint and arthritis discomfort therefore becoming and remaining physically active is an effective form of treatment of the symptoms of the disease. A research project concerning SLE is the study of the role of antibodies in cognitive dysfunction in patients with SLE. The study reviewed the effects of SLE on the brain and the correlation of mild to severe cognitive impairment. There is a symptom that SLE patients experience called the â€Å"lupus fog† where the patients seem dizzy and confused. The purpose of the study is, â€Å"The primary objective of this study is to evaluate the association between cognitive dysfunction and serum anti-pentapeptide Ab. Magnetic resonance imaging (MRI) will be performed for evaluation of potentially confounding central nervous system (CNS) disease such as cerebral infarction, and of blood brain barrier breakdown by employing gadolinium enhancement. Furthermore, in participants who agree, a lumbar puncture will be performed and cerebrospinal fluid will be obtained for preliminary evaluation of the intrathecal levels of the anti-pentapeptide Ab associated with cognitive dysfunction. If the anti-pentapeptide Ab is associated with cognitive dysfunction, therapeutic interventions via NR2 receptor blockade or the blockade of the anti-pentapeptide Ab may be considered in a future study. † (2008) They are hoping to find the connections to the cognitive dysfunction so that they are able to treat these symptoms of SLE. Systemic lupus erythematosus patients have not had many new treatment options. According to The Lupus Foundation, â€Å"There have been no new treatments for lupus in the past several decades until the 2011 FDA approval of belimumab. † (2012) MedicineNet. om explains belimumab as a synthetic injectable antibody that blocks the autoimmune attack of the body on itself. It helps fight the disease and all of the debilitating symptoms. It is said that, â€Å"belimumab-treated patients experienced less activity of their SLE than those who received other SLE therapies. † (2012) The best interventions to assist in minimizing the impact of the illness is exercise and compliance with the medical plan put in place by the health care provider. The research performed for this paper shows that most SLE patients become less active and do not want to adhere to the medical plans that they should follow. Patient education is key in getting SLE patients to follow their medical regimen. Studies have proven that exercise is an excellent way to control pain and deal with the symptoms of the disease. The more education and support that the provider pushes their patients to seek the better off the patient will take care of themselves. Self-education makes the patient feel that they have a vested interest in the management of their care. They will not just depend on the provider and their care givers to make everything happen as it should. They will not just depend on medications to heal. They will help to mentally prepare themselves for their life with SLE. In conclusion, patients with SLE should understand the psychosocial aspects of their condition and help to educate their spouses and family in what to expect to happen during their lifetime. Patients should adhere to the medical plans put in place by their health care providers and educate themselves in all of their treatment options. The more educated a patient becomes about their condition the more they can assist their own bodies in dealing with the symptoms it experiences mentally and physically.