#34464: Systemic Lupus Erythematosus

CLE is associated with various types of acute and chronic lupus, but the most prevalent form is discoid lupus erythematosus (DLE). DLE is often considered a mild form of lupus, while SLE is the most severe form of the disease [14]. About 20% of individuals with DLE will develop SLE [10].

Symptoms of DLE include lesions that are patchy, crusty, raised, and/or red and scaling, typically nonpruritic plaques, with follicular plugging and central atrophy [2,5,10]. The lesions have a "coin-like" or discoid appearance and most commonly appear on the face or scalp, but may appear on any part of the body. Facial lesions may form a "butterfly" pattern. The hair of an individual with DLE tends to be brittle or may fall out in patches. The lesions may resolve completely or result in hypopigmentation, hyperpigmentation, atrophy, permanent hair loss, or permanent scarring [2,4,10].

Diagnosis of DLE is based on the patient's history and the rash-like symptoms. A skin biopsy of the lesion reveals immunoglobulins or complement components [2]. SLE must be ruled out in a case of DLE by a negative antinuclear antibody test. Management of DLE includes [2,12]:

Subacute CLE, or SCLE, accounts for 10% of all lupus cases [10,11]. Nearly half of patients with SCLE also have SLE. This condition is often induced by ultraviolet light exposure, and characteristic lesions present as a red ring-shaped patch with scaly borders and a light center, or scaly red bumps in sun-exposed areas [10,12]. Unlike DLE, subacute CLE lesions will not usually scar, but there is a potential for skin discoloration, which is often more severe on darker skin.

It is important to note that lupus lesions or rashes may appear different on individuals with brown or black skin. In contrast to the clinically defined "red" or "erythematous" color, lesions or rashes on patients with dark skin may present as dark purple or dark brown, making them easier to overlook. Healthcare professionals should be aware of the varying presentations of cutaneous lupus among individuals with darker skin tones [10].

Drug-induced lupus occurs as a consequence of the administration of various medications [14]. There are approximately 50,000 new cases of drug-induced lupus reported annually in the United States. Patients with drug-induced lupus tend to be older (between 50 to 70 years of age) than those diagnosed with SLE, mainly due to trends of medication use and polypharmacy in aging populations. No significant statistical difference is apparent in the prevalence for men versus women [15]. Ingestion of specific medications may result in symptoms similar to those seen in SLE, including fever, rash, arthritis pain, and inflammation of the lining around the heart and/or lungs, as well as lab findings consistent with SLE [2]. While more than 30 medications have been linked to the development of drug-induced lupus, three drugs—procainamide, hydralazine, and quinidine—are the cause in 5% to 20% of cases [14,15]. Other drugs with proven association include carbamazepine, chlorpromazine, isoniazid, methyldopa, minocycline, penicillamine, sulfasalazine and newer tumor necrosis factor (TNF) inhibitors [15]. Drugs with possible association include beta-blockers (such as atenolol and practolol), captopril, cimetidine, lithium carbonate, phenytoin, ethosuximide, methimazole, and statins [2,3,15]. The discontinuation of the medication precipitating drug-induced lupus usually results in resolution of the condition [2]. Generally, no other specific treatments are known [15].

Infants born to women with lupus are at risk for a rare condition referred to as neonatal lupus, which is not a true form of lupus. It occurs when an infant passively acquires autoantibodies from a mother with SLE [14]. Approximately 3% of infants born to women with lupus will have this temporary condition [2]. Women with diagnosed lupus should be screened for neonatal lupus during pregnancy by having a maternal blood test between 18 and 24 weeks gestation [2]. Infants with neonatal lupus may experience a rash, blood abnormalities, and liver problems. Most resolve by 6 months of age [14]. Some infants develop potentially serious complete heart block [5,6,14]. The heart block is treated with a pacemaker insertion [6]. In addition, approximately 25% of these infants are born prematurely [2].

As noted, SLE is a chronic inflammatory autoimmune disorder of the connective tissue and primarily affects the skin, joints, blood, and kidneys [1,2,3]. As the most common form of the disease, accounting for nearly 70% of all lupus cases, SLE will be the primary focus of this course [2]. Therefore, the term "lupus" will refer specifically to SLE for the purposes of this course.

Immune dysregulation, in the form of autoimmunity, is thought to be the prime cause of lupus. In patients with lupus, the body produces an accelerated inflammatory response, resulting in the production of autoantibodies (antibodies to one's self), causing immune complexes (antigens combined with antibodies) [3,16]. These autoantibodies and complexes assault the body's own healthy cells and tissues [2,3,4,5]. Antigen-antibody complexes can attack or suppress the body's normal immunity and cause damage to tissues. Symptoms of lupus are the result of the damage to the body's tissues secondary to the immunologic response.

A shortage or functional failure of T lymphocytes is believed to be partially responsible for this autoimmune reaction. Red blood cells, neutrophils, platelets, lymphocytes, or almost any organ or tissue in the body may be attacked. One of the hallmark indicators of lupus is the formation of autoantibodies, and the presence of autoantibodies in the blood is a key factor to the diagnosis of lupus [2,3,5].

The strong hereditary component of lupus is supported by the fact that first- and second-degree relatives of patients with lupus are at a greater risk for developing lupus [17]. Estimates indicate that 5% to 13% of relatives will develop lupus, but only 5% of children whose mothers had lupus will develop the disease [17]. An immediate blood relative with a history of other autoimmune disorders, such as rheumatoid arthritis or scleroderma, also appears to place individuals at greater risk for developing lupus [4].

At this time, researchers have identified several genes linked to an increased susceptibility of lupus and have identified one gene with a direct causative mutation [2,62]. One study indicated that a human leukocyte antigen (HLA) region that is controlled by genes on the sixth chromosome may be specifically responsible for lupus. The HLA can amplify or perpetuate certain immune and inflammatory responses, particularly autoantibodies [3]. A variant form of the STAT4 gene has also been associated with an increased risk for developing lupus. Researchers have found that persons with two copies of the disease-risk variant of the STAT4 gene have more than two times the risk for developing lupus compared to those with no variant form of the gene [18]. In a groundbreaking study published in 2022, researchers were able to pinpoint a single point mutation in the TLR7 gene of a child with severe lupus and to recreate the development of lupus with specific symptoms in laboratory mice [62]. By confirming that the mutation is a cause of human lupus, new opportunities are afforded to develop treatments [62].

The fact that women in their reproductive years are most susceptible to lupus indicates the possibility of hormone involvement in development of the disease. The female sex hormone estrogen can increase lupus activity [3]. As a result, disease flares may occur with pregnancy, in the days prior to menstruation, or in the postpartum period 2]. The ways in which, and to what degree, sex hormones affect the incidence and severity of lupus remain unclear and are topics of ongoing research.

For those with a genetic predisposition, environmental factors may trigger lupus [2]. Environmental factors that may precipitate or exacerbate lupus include physical or emotional stress, streptococcal or viral infections, exposure to sunlight, immunizations (live vaccines), surgery, smoking, chemical agents (drugs, metals, or toxins), certain foods or supplements, and other environmental irritants [2,4,19]. As noted, the triggering or aggravating of lupus may also occur with pregnancy or an abnormal estrogen metabolism. Research is being conducted to determine the link between stress and the production of stress hormones (adrenaline and cortisone) and the triggering or exacerbation of lupus. Many patients with lupus report initial symptoms or flares with stressful events in their lives, such as divorce, birth, death of a loved one, or loss of a job [2].

Common symptoms of lupus include fever, weight loss, malaise, fatigue, skin rashes, polyarthralgia, vasculitis, Raynaud syndrome (discussed in detail later in this course), patchy alopecia (hair loss), and painless ulcers of the mucous membranes [5]. Fatigue is probably the most universal symptom, described as a persistent complaint of a paralyzing fatigue that normal rest may not relieve [2]. Vague symptoms of lupus include aching, fatigue, low-grade or spiking fever, chills, and malaise. Episodic fever is reported by more than 80% of all patients with lupus, with a low-grade fever most often noted [2]. Infection is certainly a major concern and is a potential symptom for patients with lupus. Those with lupus are more susceptible to opportunistic infections due to alterations in their hematologic system, especially in white blood cells. Women with lupus may also experience irregular periods or amenorrhea due to the disease process [2,3].

The British Association of Dermatologists recommends that patients presenting with alopecia areata (i.e., patchy hair loss) undergo serology testing for systemic lupus erythematosus as part of the differential diagnosis.

(https://onlinelibrary.wiley.com/doi/10.1111/j.1365-2133.2012.10955.x Last Accessed: October 10, 2023)

Level of Evidence: Expert Opinion/Consensus Statement

Skin rashes are very common among patients with lupus; approximately 80% of patients report skin involvement [2]. A red, raised rash over the nose and cheeks characterizes the classic malar or "butterfly rash" of lupus. The butterfly rash is reported by 55% to 85% of all patients with lupus at some point during their disease process [2]. Discoid lupus lesions may also be seen. Ultraviolet light often aggravates skin eruptions, and approximately one-third of all patients with lupus are found to be photosensitive [2,15]. Oral, nasal, and vaginal ulcers may occur. Conditions such as alopecia, pruritus, alteration in wound healing, and bruising are other common dermatologic symptoms.

Polyarthralgia (pain in multiple joints) occurs in more than 90% of lupus cases [2]. The joint pain associated with lupus is similar to that experienced by rheumatoid arthritis patients and is often called lupus arthritis. Most patients complain of morning joint stiffness and pain. The pain is typically symmetrical, and joints may become tender, warm to the touch, and swollen. The dominant extremities are usually more inflamed. Joints commonly affected include the toes, ankles, fingers, wrists, elbows, and knees [20]. Joint pain is often one of the first and most common complaints of those with lupus and is often what initially brings them to a healthcare provider [4]. Additional musculoskeletal symptoms that may occur include subcutaneous nodules, tendonitis, tendon rupture, and carpal tunnel syndrome [2].

Anemia occurs in approximately 50% of all individuals with lupus [21]. The anemia can result from various factors, including low iron levels, medications, gastrointestinal bleeding, or autoantibody formation to red blood cells [2]. Leukopenia, a decrease in white blood cells, is common in patients with lupus but is rarely significant enough to cause infection [21]. In addition, thrombocytopenia, a low platelet count, may occur [5]. This condition can occasionally result in blood clotting or bleeding problems for patients with lupus [4]. Lymph node enlargement is also a potential symptom of lupus.

Two key symptoms in lupus, especially prior to diagnosis, are weight loss and anorexia. These two symptoms are also common to numerous other health conditions and may not be linked to the diagnosis of lupus. Abdominal pain, dysphagia, gastroesophageal reflux, nausea, vomiting, diarrhea, and constipation are also potential symptoms [22]. Hepatic involvement may result in liver enlargement, jaundice, hepatic vasculitis, Budd-Chiari syndrome (blood clot in the portal veins), ascites (fluid accumulation in the abdomen), and abnormal liver function tests [22]. Pancreatitis is another potential complication, occurring in about 5% of patients with lupus [2,3].

Approximately 50% of patients with lupus develop symptoms of cardiopulmonary abnormalities, including pericarditis, myocarditis, myocardial infarction, endocarditis, and tachycardia. Pleurisy, parenchymal infiltrates, dyspnea, pneumonitis, and edema in the extremities are also common. The most common cardiac complication of lupus is pericarditis, while pleurisy is the most common respiratory complication [2,3].

Vascular symptoms may include vasculitis or Raynaud syndrome. Vasculitis may include necrotic ulcerations that occur most frequently on the lower legs, ankles, and dorsa of the feet [2]. Raynaud syndrome can develop, especially in the digits of the hands and feet, secondary to stress, cold, or vibratory stimuli [3]. This condition is caused by sudden onset of vasospasms of the fingers and toes. The vasospasms cause the digits to tingle and the extremities to turn red, blue, or white in color. In serious cases, it can lead to infarctive lesions, necrotic ulcers, or gangrene. This form of cold sensitivity occurs in approximately 40% of patients with lupus [23].

An additional cardiopulmonary symptom is termed livedo reticularis. This condition occurs due to a disordered blood flow near the surface of the skin [3]. It is a reddish mottling or cyanotic lace-like pattern seen on the arms, legs, or torso of the body, especially apparent in cold weather [2].

Renal damage is one of the most serious complications of lupus, often causing such symptoms as hematuria, proteinuria, urine sediment, cellular casts, urinary tract infections, and fluid/electrolyte imbalance. Renal involvement has the potential to cause renal failure, affecting up to 50% of patients [2]. Renal disease is a leading cause of death in patients with lupus [2].

Nervous system involvement secondary to lupus is common and can range from mild to severe. Central nervous system involvement may result in cognitive disorders, including confusion, fatigue, memory impairment, and difficulty in articulating thoughts [3]. Cognitive dysfunction is estimated to occur in up to 90% of patients with lupus and is not associated with lupus disease activity [27]. Other neurologic conditions may include convulsive disorders or seizures, mental dysfunction, stroke, paralysis, behavioral changes or emotional instability, headaches, psychosis, organic brain syndrome, dizziness, irritability, and depression [4,5]. In addition, those diagnosed with lupus are twice as likely to experience migraine-like headaches [3]. Central nervous system conditions rank only behind renal disease and infection as a leading cause of death for those diagnosed with lupus [2].

Ophthalmic disease affects approximately 20% of patients with lupus [2]. Ophthalmic symptoms associated with lupus may include a lupus rash on the eyelids, conjunctivitis, dry eyes, glaucoma, and cataracts [2]. In severe cases, retinal exudates or blindness may occur.

The diagnosis of lupus can be facilitated with a physical examination, extensive patient history, various laboratory tests, and radiographic evaluations[3,5]. There are several laboratory procedures that help to diagnose and monitor individuals with lupus; these various tests have different implications for the patient (Table 1) [2,3,5,24,25].

The antinuclear antibody (ANA) test is the most specific and sensitive test for lupus and is therefore the most commonly used autoantibody test. Ninety-seven percent of patients with lupus have a positive ANA blood test. The titer and patterns of the blood sample are reported. A titer greater than 1:80 is usually considered positive [24]. It is important to note that a positive ANA test is found in 97% of patients with lupus, but alone, it does not indicate a conclusive diagnosis of lupus [24]. A positive ANA test, although not always found, satisfies one of the four typical clinical characterizations required for a definitive diagnosis of lupus. ANA tests may also be positive in patients with other connective tissue diseases, chronic infectious diseases, and autoimmune diseases [24].

Other laboratory tests are available to assist in diagnosis or to monitor the effects of treatment. The anti-DNA blood test indicates disease activity, especially renal involvement. The anti-DNA test is most often used to monitor response to treatment. In remission, the anti-DNA test response is reduced or absent. In addition, the complement assay levels can assist with the diagnosis and monitoring of active lupus. The most common complements associated with lupus are C3, C4, and CH50. When these complement levels are decreased, they can indicate an increase in disease activity [22].

Skin and kidney biopsies can also be used in the diagnosis of lupus. Biopsies assist in determining disease presence in organs as well as tissues. Kidney biopsy determines the disease stage and extent of renal involvement secondary to lupus. A chest x-ray can identify pleurisy or lupus pneumonitis, while an electrocardiogram can be used to indicate conduction defects that may occur with cardiac involvement or pericarditis.

As noted, lupus is a condition that is often difficult to diagnose due to the significant variation of symptoms among individuals. In 2019, the European Alliance of Associations for Rheumatology (formerly the European League Against Rheumatism) (EULAR) and the American College of Rheumatology (ACR) published updated classification criteria for lupus (Table 2) [28]. The EULAR/ACR criteria classifies a person as having lupus if they meet entry criterion of an ANA titer of >1:80, followed by additive weighted criteria (seven clinical and three immunologic) in which the patient must meet one clinical criterion and ≥10 points between the clinical criteria and immunologic criteria[28].

Individuals diagnosed with lupus are encouraged to prioritize the following [2,3,4,5]:

Eight to 10 hours of sleep per night along with naps are recommended for patients with lupus. In addition, individuals with lupus should minimize stress to reduce emotional distress, as well as avoid direct prolonged sunlight, especially during the hours between 10 a.m. and 4 p.m. The use of a sunscreen with a sun protective factor (SPF) of 50 or greater that protects against both ultraviolet A and B rays is recommended along with protective clothing such as long sleeves and a hat [2]. Routine exercise is important to reduce fatigue and maintain joint mobility.

Although there is no cure for lupus, there are several types of drugs available to aid in the treatment and management of secondary symptoms. Among these drug classes are nonsteroidal anti-inflammatory drugs (NSAIDs), monoclonal antibodies, corticosteroids, antimalarials, biologics, and immunosuppressives. In cases of severe lupus kidney disease not helped by pharmacologic intervention, dialysis or kidney transplant may be necessary.

In addition to physical symptoms, those with lupus may experience psychological and emotional manifestations that may result from the physical symptoms of and treatments for the disease. Because many individuals who receive the diagnosis of lupus are relieved to finally have a name for the condition that afflicts them, the chronic nature of the condition may not be of immediate importance [44]. Initially, the individual may be more focused on treating the symptoms of lupus rather than the realization that there is no cure. Individuals with lupus face the uncertainty of the disease process, including the unpredictability of disease flares and remissions. Thus, living with a chronic disease like lupus can be overwhelming for patients, marked by uncertainty and the potential loss of function secondary to the disease process [1].

Generally, those with lupus are in the young adult development stage of life when an initial diagnosis is made. Lupus may cause alterations in the individual's ability to achieve specific tasks fundamental to this developmental stage. Common tasks or activities for the young adult's developmental goal achievement generally include gaining independence, achievement of vocational goals, establishment of intimate relationships, social responsibility, childbearing, and childrearing [1]. Limitations in any of these developmental activities for this specific age group can result in challenges for the individual diagnosed with lupus.

The psychological impact of lupus can be variable. Lupus may impact family life, work, sexual activity, social activities, finances, and day-to-day living [4]. The diagnosis of lupus may impact one's current lifestyle and result in a need for changes in that lifestyle pattern. It may affect the ability to maintain employment status, alter financial stability, and create a potential for the loss of a role, status, or independence. Being diagnosed with a chronic illness may result in a wide range of reactions, including anxiety, fear, shock, denial, negative self-esteem and body image, and self-blame [4]. Feelings of isolation, grief, stress, guilt, anger, loss of control, decreased confidence, depression, hopelessness or helplessness, irritability, and suicidal ideations are also common in those with a chronic illness such as lupus [1,2,3].

Both the perception and importance that an individual and his or her family attribute to a chronic illness can affect the individual's ability to accept the condition and make the adjustments necessary to cope [1]. Illness and disability can impact the relationships of the person diagnosed with the chronic illness. Individuals may fear the loss of a relationship secondary to their chronic illness condition; therefore, they may try to conceal the impact of the condition on their life in order to maintain the relationship [45].

Baker and Wiginton found that study participants "expressed concern that others in their lives did not understand lupus and failed to acknowledge the seriousness of their conditions due to the symptoms not being readily apparent" [44]. Family and friends may deny that the disease is a problem, fail to assist the individual, or fail to understand the disease, particularly if the individual shows no outward signs of the disease. Falvo terms this "invisible disability" [1]. Lupus is one such invisible chronic illness. Additionally, some people may be uncomfortable being in a relationship with an individual with a chronic illness like lupus. They may not know what to say, worry about saying the wrong thing, or fear that the chronic disease is contagious.

Sexuality and interpersonal issues may also be impacted by a chronic illness. Physical limitations, lack of energy, pain, alterations in self-image, or other reactions may impact the sexuality of an individual with lupus [1]. However, a lack of pleasure from sex and presence of sexual dysfunction is not typical in women with SLE [3]. A large survey found that only 4% of women have significant sexual problems related to the disease [3]. Open communication and knowledge regarding the lupus disease process can prevent uncertainty and issues regarding sexuality.

Some individuals with a chronic condition like lupus do not want to burden or inconvenience those around them; thus, they attempt to manage the disease on their own. Individuals with a chronic illness should make families aware of the necessity for adjustments or alterations in roles and tasks secondary to the lupus disease process. Families should be aware of the fact that lupus requires ongoing care and treatment to effectively control the disease. It has been suggested that, compared to women, men may feel more uncomfortable or intolerant regarding a chronic illness such as lupus. This may be due to the fact that women have historically had the primary caregiver role, particularly regarding care of the ill [45].

Ongoing management of a chronic disease such as lupus is imperative [46]. Baker and Wiginton found in their research that the majority of the participants engaged in self-management for controlling their lupus [44]. Individuals with lupus who understand the impact of having a chronic illness, as well as the skills necessary to control this type of condition, can increase the likelihood of successful disease management.

According to Phillips, one of the most central aspects of coping with lupus has to do with gaining control of one's life [4]. The use of effective coping strategies can enable an individual to manage his or her emotions. In research completed on coping, psychological adjustment, and health status among women with lupus, it was found that women who engaged in avoidant coping (failing to engage in coping strategies) were more likely to suffer from depression and had greater fatigue and a lower health status [47]. The researcher also indicated that there is a paucity of research on the psychosocial aspects of lupus, especially regarding coping with lupus and its impact on psychological adjustments and health status [47].

Coping strategies are used "to manage, tolerate, or reduce the stress associated with significant life events and to attempt to restore psychological equilibrium after a stressful or traumatic event" [1]. Coping strategies can be adaptive (effective) or maladaptive (noneffective). Individuals have the propensity to engage in coping strategies that have been previously effective. If coping strategies become ineffective, then he or she can alter strategies in an attempt to cope and manage the chronic illness [1]. It is critical to the individual with lupus that he or she engage in effective coping strategies to reduce stress, maintain psychological well-being, and regain control of the situation. Phillips indicated that successful living with lupus can be achieved by taking charge, seeking information, developing a positive relationship with one's physician, and assisting one's family with adjusting to the diagnosis [4].

Tremendous stress may be associated with managing a chronic illness. The loss of control related to the chronic disease can exacerbate the stress level for an individual. Stress also may be elevated by the compromising of roles and changes in the level of functioning [1]. It is vitally important that an individual's personal perception of the stresses associated with the disease, as well as their capacity to cope, be considered, as perceptions of stress and coping abilities will vary. Ineffective coping and high stress levels in individuals with chronic illnesses can result in depression, which is the most common coping problem in patients with lupus [3].

Considerable emotional support may be required by the patient with lupus to cope with the chronic disease. More than 50% of all individuals with lupus experience emotional problems secondary to their illness [4]. Some individuals are overwhelmed with having a disease. They may find professional counseling to be an important means of managing their condition.

A method called cognitive mapping has been used to ascertain how women with lupus represent their illness [48]. In one study, 20 female patients with lupus were interviewed in the convenience sample and asked to generate major concepts for the question, "When you think of living with lupus, what words come to mind?" In addition, participants determined the positive and negative relationship among the identified words or phrases. The concept mapping procedure generated 355 concepts from 20 participants, with 192 unduplicated concepts. Pain was the most commonly identified concept reported by participants. The report concluded, "although diagnosed with the same illness, women presented with different mental representations of the illness" [48].

In another study, Baker and Wiginton surveyed 38 women to assess their perceptions and coping with lupus. They concluded that many women were relieved to have been diagnosed with lupus, as they finally had a label for their symptoms. Study participants also desired "current and accurate information about lupus" [44].

Social support can have a positive impact on individuals diagnosed with lupus. Stewart defines social support as "interactions with family members, friends, peers, and health professionals that communicate information, esteem, practical aid, or emotional help" [49]. Stewart found that social support may enhance coping and that these interactions helped to moderate the impact of stressors and promote health [49]. Social support can be gained from various sources, including a spouse or partner, other family members, friends, co-workers, neighbors, volunteers, church members, community members, online or in-person self-help mutual aid groups, or healthcare professionals [49].

Seeking and gaining social support can be difficult when one is experiencing a chronic illness such as lupus because tremendous energy is necessary to maintain social networks [45]. Lupus symptoms, as well as treatment side effects, can present a challenge for individuals in maintenance of their pre-illness social relationships and activities. Furthermore, to gain necessary support, individuals with lupus should understand and then communicate to others what they need to assist them in managing their disease.

Keller noted similar findings in her research on social support and psychological distress in women with lupus. She concluded that "younger women with lupus were more psychologically distressed than older women with lupus and that women with shorter duration since diagnosis were more distressed" [50]. Keller also found that the perception of having social support and being satisfied with the social support were more important than the number of social supports [50]. Thus, perception of and satisfaction with social support has been found to reduce psychological distress.

One important potential source of assistance can be support groups. It has been noted that "participating in a support group can provide emotional assistance, boost self-esteem and morale, and help to develop or improve coping skills" [5]. Successful support groups can assist patients to gain insights into how to live with their lupus [51]. Darner found that women with lupus who had been diagnosed for longer periods of time had a healthier psychosocial adjustment [52]. Therefore, those newly diagnosed with lupus may require more support and interventions to aid in psychosocial adjustment. Findings indicate that "support groups, self-help groups, and peer counseling…may facilitate the individual's achievement of a positive adjustment to the newly diagnosed illness" [52]. Self-help groups offer patient education on lupus disease management, and it is recommended that those newly diagnosed with lupus receive support via peer groups. Darner concludes that "involvement in self-help/support groups by the majority of subjects was thought to have influenced positively the psychological and social adjustment of the SLE women" [52].

Support groups provide an avenue for the exchange of feelings and ideas regarding lupus. Phillips, founder of the Center for Coping, stated "self-help or support groups can be incredibly helpful and are some of the best sources of support for people with lupus" [4]. Support groups also restore a sense of autonomy and self-reliance, resulting in a reduction in dependency for the group participants [53]. These groups can provide ideas on how to effectively cope with serious illness and manage problems associated with the condition. Lupus support groups can help members "realize they have the inner strength to cope with existential dilemmas of life as well as the comfort of knowing there are others like themselves" [51]. Gartner states that "in the case of most chronic illnesses, the issue is care not cure, and the mutual-support group can play a powerful role in helping individuals cope with their illness" [53].

Online social support groups may be an important resource for patients with lupus, especially those who live in rural areas or are unable to leave their homes. Patients may be directed to one of many support groups available online, including LupusConnect (https://www.lupus.org/resources/lupusconnect) or MyLupusTeam (https://mylupusteam.com).

Studies indicate that learning about one's disease process can aid individuals. In addition, it can increase the likelihood of participation in one's care and improve disease outcome [5]. One important voluntary organization that is dedicated to providing such services is the Lupus Foundation of America (LFA). The LFA's mission is to "improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. [The LFA is] focused on achieving the following disease-specific outcomes: reduce time to diagnosis; ensure people with lupus have an arsenal of safe and effective treatments; and expand direct services and increase access to treatment and care" [55]. The LFA has created the World Lupus Federation, which has more than 200 groups, with the goal of bringing greater attention to end lupus. The LFA provides education services, referrals, health fairs, newsletters, publications, and seminars, and works toward funding research, accelerating delivery and improving cost of medication, and spreading awareness. Support is provided to patients with lupus and their families and friends through the LFA organization [5]. The foundation's website is https://www.lupus.org. To increase national recognition for lupus, May has been designated as Lupus Awareness Month.

The Lupus Research Alliance is the "world's largest nongovernment funder of lupus research. The organization aims to transform treatment while advancing toward a cure by funding the most innovative lupus research, fostering diverse scientific talent, stimulating collaborations and driving discovery toward better diagnostics, improved treatments, and ultimately a cure for lupus" [56]. The Lupus Research Alliance provides information, research and clinical trials information, and community outreach for those affected by lupus. Information may be accessed at https://www.lupusresearch.org[56].

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a division of the National Institutes of Health, is a leader and coordinator of biomedical research regarding lupus [5]. NIAMS produces free lupus information that may be accessed online at https://www.niams.nih.gov/health-topics/lupus.