Abstract
Systemic lupus erythematosus, also known as lupus, is a chronic autoimmune disease that affects multiple systems of the body. Lupus can affect any persons of any age range, ethnic group or gender. Although more than 90% of diagnosed with lupus are women of childbearing years. Because lupus is chronic inflammation, it is often misdiagnosed as rheumatoid arthritis causing treatments to be delayed and the cost of medication and treatments to be excessive. On the contrary, with early diagnosis and treatments for those affected with lupus will have a normal or near normal life expectancy. The importance of quality of life is to be able to find new ways to detect lupus before its left untreated. With scientific and analytical data supporting new preventions discussed and both cultural and ethical perspective supporting the new proposed treatment.
Keywords: Systemic lupus erythematosus, Lupus, SLE, diagnosis, treatments, medications, cost,
Life with Lupus
Introduction
By the year 2025, treatment and cure specifically made for lupus will be available for all to be able to use. The new treatment will be modern drug to target the specific cause of lupus and be afford for all to live a normal or close to normal life. The well-being of an individual is an essential part of accomplishing health goals, evaluating health concerns, and determining the efficiency of healthcare supports for illnesses. A person's wellbeing is not only their happiness also life contentment. Unfortunately, research estimates "at least 1.5 million Americans have a form lupus but more than 50% suffer from lupus before being properly diagnosed" (Jewett-Tennant, 2018). Due to lupus being a chronic autoimmune disease that affects multiple systems of the body. This affects patients physically, mentally, emotionally, and socially which is numerous effects on everyone's quality of life.
Lupus can affect any persons of any age range, ethnic group or gender. Although more than 90% of diagnosed with lupus are women of childbearing years. Because lupus is a systemic disease, it is often misdiagnosed due to the various symptoms it indicates. "46.5 percent report being misdiagnosed with something other than lupus at the start of their journey with this unpredictable and life-altering disease…more than half (54.1 percent) were told that there was nothing wrong with them or that their symptoms were psychological" (Lupus Foundation of America, 2017). Often the diagnosis of lupus can affect influence an individual's value of life including the capability to work.
Lupus symptoms are asymptomatic there no diagnostic test able to determine if one has lupus. Although Antinuclear antibody test is often used to diagnose lupus, it is not a specifically for lupus. Thus, only allows various laboratory tests used to identify any physical changes or physical conditions in your body that can occur with lupus. With no antidote for lupus, treatments can only help manage the symptoms, which can become costly for one who cannot afford the medical necessities. According to the Lupus Foundation of America, "the yearly cost of treatment for lupus averages more than $12,600 per patient." Depending on what type of lupus a patient has, could cost more, between $30,000 to $60,000 a year. With new advances, early-intervention or possible disease-prevention strategies are in progress.
Lupus is a chronic and complex multisystem autoimmune disease. Because multiple systems are affected, it is characterized by the periods of the severity of lupus and its remission periods. Systems affected with lupus conclude the kidneys, heart, skin, nervous system, joints, lungs, and gastrointestinal tract; although not all affected simultaneously. Remission may last for many years depend on the severity and how well a patient treats their body. Infections, specific drugs, and sunlight may trigger lupus to flare up.
Scientific and Mathematical/Analytic Aspect of Lupus:
Lupus can occur without any warning with the wide range of symptoms. Symptoms one could experience are persistent fatigue, skin rashes on the face- malar or butterfly rash, wrist, hands, and joint pains. Others may experience hair loss, unexplained fevers, anemia, chest pains while taking deep breaths or sores in the mouth that last longer than five days. Some might experience swelling in the legs and ankles as well.
Scientists have investigated and found that genetics, environmental and hormones could be the leading causes of lupus. Although lupus can develop in patients with no family history of lupus, there's the high chance there are other autoimmune diseases in some family member. Because Lupus attacks its own immune system, which can be triggers could be caused by infections, specific drugs, sunlight, and smoking. Emotional stress such as illness, death, divorce, or any other complications may trigger lupus. Physical stress to the body like surgery, pregnancy can cause flares up.
Serious circumstances associated with lupus are cardiovascular disease, kidney disease, and stroke. Those affected with lupus, have an increased chance of having atherosclerosis, which is the hardening of the arteries. Inflammation can not only affect the skin but also the heart in the myocarditis and endocarditis or in the membranes surrounding the heart. Endocarditis damages heart valves and causes heart murmurs. Lupus can affect the kidneys which require patients to be on intensive drug treatment to prevent any permanent damage. Lupus may affect the brain or nervous system and cause seizures or stroke to the patient.
Because lupus is chronic inflammation, it is often misdiagnosed as rheumatoid arthritis causing treatments to be delayed and cost or medication and treatments to be excessive. With treatments cost patients with lupus annually $12,600. Due to complications of lupus and affecting the ability to work normal, "two of three lupus patients reported a complete or partial loss of their income because they no longer are able to work full time" (Lupus Foundation of America). A third has been temporarily disabled by this disease while a fourth is currently receiving disability paychecks.
Living with lupus is a financial burden that is difficult for others to understand and support. "Most than 84% people with lupus name other family members as their primary support network" (Lupus Foundation of America). The inability to work due to lupus can cause pressure in other family members and support the necessities.
The daily physical routine is affected by lupus immensely. Due to the unbearable flare-ups of inflammation and stiff joints, normal responsibilities may seem unmanageable and results in the needed for help from other family members or friends. In addition to the daily responsibilities, assistance is needed for follow-ups and lab testing at the doctor's office can be strenuous to the body. With the lab work including blood count checking, creatinine, and urinalyses are crucial to detect any new signs and symptoms of new organs and to monitor responses to treatments and any harsh reactions to therapy.
Cultural and Ethical Aspect of Lupus
According to the Lupus Foundation of America, most than 16,000 new cases of lupus are reported annually across the country. There is an estimated 1.5 million American have lupus though this number may be higher due to not having a large-scale study to show the actual number of people. Systemic lupus erythematosus (SLE) affects both men and women of all age range, though most often affect minority women. According to CDC, "Minority and ethnic groups, including blacks/African Americans, Hispanics/Latinos, Asians, and American Indians/Alaska Natives, are affected more than whites" (CDC, 2018). Lupus affects mostly women in childbearing age and others, including men, can develop lupus between the age of 15 to 44 years old.
Most people diagnosed with lupus, do not have a relative who is diagnosed with lupus though some do have a relative effect with lupus. Lupus is shown at a much earlier rate and tends to behave worse symptoms which tend to have a high death rate. Due to the increased chance of people of color having lupus, "the death rate of people with lupus is nearly three times high for African Americans than whites" (Jewett-Tennant, 2017). In 2017, Lupus Research Alliance and National Minority Quality Forum created an inaugural meeting in New York which had 30 national experts and key opinion leaders. During this meeting, participants discussed many obstacles one may face: "the reluctance of physicians to present clinical research as a treatment option, logistical challenges, lack of perceived benefit, and fear that current symptoms will worsen" (Lupus Research Alliance). Determining which ethnicity is affected more, can help healthcare providers to show more attention to those specific groups and help prevent any further difficulty of the autoimmune disease.
For many, lupus can affect the way they work and their education. According to Glinda S Cooper, "an association was seen with outdoor work in the 12 months preceding diagnosis, but no association with the total number of years of outdoor work." Those exposed to the sun during midday have a higher chance of getting a sunburn with blisters or a rash. Patients not only have a higher exposure to sunlight but also with silica dust and chemical solvents have a higher risk and severity of lupus symptoms. Occupations related to silica jobs such as pottery, manufacturing China, ceramics or computer wafer. As well as those who work in a dental laboratory or dental office that involved pouring molds, to the manufacturing of glass, plastic, or dyes (Cooper, 2010).
Furthermore, the education level is an important factor a person diagnosed with lupus. "Studies have shown that people with lupus who have lower household income, lower level of education, or less of a support system tend to do worse with the disease" (U.S. Department of Health and Human Services Office on Women's Health, Dec 2011). Those with less education level, those patients affected with lupus feel hopeless and helpful in their future. With the rising of lupus' severity, some may be unable to self-support themselves and must have assistance from others. Thus, creating having lupus harder for those with little to no insurance to find affordable treatment for lupus.
Because lupus affects many body parts, daily lifestyle can be difficult to accomplish. Symptoms of lupus are not limited to: "intense fatigue, fever, severe joint pain, and muscle aches, confusion, seizures, dizziness, and headaches" (Martin, MD, 2018). These are often called "flares" and symptoms could get worse before they get better or even go away together or worst case, not improve at all.
Religion, defined by Merriam-Webster, is "a personal set or institutionalized system of the religious attitude, beliefs, or practices." Patients with lupus would often ask the questions "why me: and "why now" to reconstruct their life (Taieb, 2009). While taking care of a patient, health care providers need to understand and take into consideration the patient's beliefs and values. Through the different types of treatments to which physician and/or nurse can affect a patient's understanding of the situation at hand. Though patients with lupus and religion do not have a significant statistical connection, many use religions to help cope with the pain and any personal issues that may occur. Because lupus is a life-long illness, having a religious belief may help alleviate the tension and feeling.
Lupus is a demanding life-change disease. Active lupus symptoms "intense fatigue, fever, severe joint pain and muscle aches, confusion, seizures, dizziness, and headaches" (Martin, MD, 2018). Especially during the flare-up moments, a patient may feel more tired, hot, and achier than normal. Because lupus also affects multi-organ disease, it could affect the brain and nervous system thus resulting in headaches, light sensitivity, and tingling.
Chronic illness like lupus makes daily duties and family care difficult than what it really should be. Because the symptoms of lupus come and go with no warnings, family members may be not understanding the internal battle going on within you. Home duties like chores and responsibilities may need to rearrange to accommodate with the necessities of one who lives in lupus. Although patients with lupus may not want to feel like a burden to their family, it is important that "other family members are understanding and supportive" (Roper, 2018). Pain and lifestyle changes are difficult to cope with a supportive family.
Cost of healthcare could be a trigger that affects a person with lupus. Studies have shown that the "average annual direct health care cost of patients with lupus is $12,643" (Panopalis, 2008). With "annual total cost per lupus patient in healthcare and lost productivity was $20,924" (Panopalis, 2008). This shows that the cost of treatment can be a heavy burden on patients and their family. "…the complexity of SLE often entails heavy resource use, whereas the younger age at onset may result in disability during a person's most productive years" (Panopalis, 2008). Due to most people are diagnosed between the age of 15-44 years old, it makes keeping employment difficult due to the symptoms and side effects of treatment. Side effects of lupus medication may cause ocular side effects. Ocular is defined as "of or relating to the eye" (Merriam-Webster, 2018). Specific drugs like "hydroxychloroquine (Plaquenil) can cause retinal toxicity over time, particularly at high dosages" (Lupus, 2018)
Conclusion
Because lupus is difficult to diagnosis right away, the only way to ensure that those who have not been diagnosis gets treatment properly is to create a testing to where we will be able to detect in early stages. Due to the extensive cost of treatments and hospital visits, those who are in lower income socioeconomic status should still be able to find an affordable coverage to ensure life is prolonged. With research, we found that those effect with lupus mostly is people of color.
Thus, should alert health care providers to provide an extra or necessary testing to be able to catch lupus because it is worse. Although it will be difficult to detect due to many times being misdiagnosed, offering a plan to slowly be able to figure out will increase the likelihood of improving people's lives and be able to treat it correctly. With regards to medication and side effects, a counter medicine should be given to prevent any serious side effects from occurring.
For others to be more aware of lupus and the severity of this disease if left untreated, preventative measures need to be established. Knowing the basic prevention like using sunscreen while exposure to direct sun or using appropriate protecting and clothing could limit the damaged of lupus on the body. In addition to prevention, increasing and promoting a healthy and balanced diet with proper exercise will promote good health and increase life expectancy.