Making Lupus Visible: Shining a light on a complex autoimmune disease

What is lupus?

Lupus is a complex, chronic autoimmune disease that affects at least 5 million people worldwide [1]. Multiple organ systems are affected, ranging from relatively mild skin involvement to severe organ damage, such as kidney and heart failure [2]. Although the aetiology of lupus remains poorly understood, interaction between environmental and genetic factors is thought to trigger production of excessive pathogenic antibodies against the patient’s own cells, resulting in cumulative organ damage over time [2]. Lupus typically shows a relapsing, remitting course, but the exact nature of a patient’s disease may vary depending on the severity of the condition and the number of flare-ups [2].

There are four types of lupus, each associated with a different clinical course [1, 3]:

Systemic lupus: Represents ~70% of all cases of lupus and affects multiple organs.
Cutaneous lupus: Accounts for ~10% of lupus cases; patients with this form experience only skin-related disease.
Drug-induced lupus: Affects ~10% of patients and arises from high doses of certain medications. Symptoms typically subside when the medications are discontinued.
Neonatal lupus: A rare condition in which the mother’s antibodies cause fetal skin rash, liver problems or low blood cell counts at birth. Symptoms typically resolve after 6 months.

Who may be at risk of lupus and what are the symptoms?

Although anyone can develop lupus, certain people are at higher risk, including [3, 4]:

Women aged 15–44 years
Those of African American, Hispanic/Latino or Asian American ethnicity
Patients with a family history of lupus

Clinical presentation can be complex, owing to the differing forms of the disease and variety of symptoms [3]. Diagnosis is based on laboratory and clinical testing and varies from patient to patient. General signs and symptoms include fever, fatigue and weight loss; however, patients may also experience pulmonary, cardiovascular, central nervous system or gastrointestinal symptoms, or a characteristic ‘butterfly’ rash on the nose and cheeks following exposure to the sun [3]. Furthermore, renal involvement is common in lupus and is associated with a poorer prognosis [3]. Approximately 50% of patients develop nephritis, a major cause of morbidity and mortality [3].

What treatments are available for patients with lupus?

Currently, there are no curative treatments for lupus; however, several therapies can be used to treat disease flare-ups and help patients achieve disease control [4]. Prompt initiation of immunosuppressive and/or biologic therapies is considered best practice to control a patient’s disease and reduce the need for prolonged steroid use, which can be associated with further organ damage [4].

What unmet needs are there for patients with lupus?

Owing to the large variety of symptoms, lupus is known as the ‘great imitator’, as it may mimic many other illnesses [3, 5]. Patients with lupus often face diagnostic challenges; it takes an average of 3.5 years to obtain a diagnosis after seeking medical help [5]. Most patients also experience misdiagnosis and are forced to seek assistance from an average of three healthcare professionals before obtaining a correct diagnosis [5].

Lupus has a significant impact on patients’ health-related quality of life, primarily driven by pain and fatigue [6]. Anxiety represents another leading cause of reduced quality of life, alongside depression, poor sleep quality and number of symptoms experienced [7]. Lastly, the lack of curative treatment means that patients with lupus can face lifelong disease, which represents a substantial long-term burden [4].

How can I get involved in World Lupus Day 2024?

Today, 10 May 2024, marks World Lupus Day, a day dedicated to raising awareness of lupus. Whether you are a patient or simply wish to show solidarity with the lupus community, you can join people all over the globe to [8]:

Share your lupus story or post lupus facts on social media, using the hashtags #WorldLupusDay and #MakeLupusVisible
Wear your favourite purple items and share photos of your outfits on social media
Make a statement as a community by illuminating a building or significant landmark in the colour purple

The World Lupus Federation has also developed a Lupus Awareness Toolkit, which includes various educational tools that individuals can use with their friends, family or local politicians [8]. Finally, there are several national events, community challenges and social media campaigns that you can get involved in to spread awareness for patients with lupus [9]. Join in to #MakeLupusVisible!

How does Porterhouse Medical support the lupus community?

At Porterhouse Medical, we are passionate about the work we do to improve patient outcomes. We work with our global pharmaceutical partners on a variety of projects that aim to educate on lupus and increase communication between healthcare professionals working in this area.

If you would like information on the insights research and healthcare communications services offered by the Porterhouse Medical team, please visit: porterhousemedical.com/our-approach/ or contact mark.walker@porterhousemedical.com. We would love to hear from you!

#WorldLupusDay #MakeLupusVisible

References

Lupus Foundation of America. Lupus facts and statistics. Available at: https://www.lupus.org/resources/lupus-facts-and-statistics. Accessed May 2024.
Ameer MA, Chaudhry H, Mushtaq J et al. An overview of systemic lupus erythematosus (SLE) pathogenesis, classification, and management. Cureus 2022; 14 (10): e30330.
Maidhof W and Hilas O. Lupus: An overview of the disease and management options. P T 2012; 37 (4): 240–246.
Fanouriakis A, Kostopoulou M, Andersen J et al. EULAR recommendations for the management of systemic lupus erythematosus: 2023 update. Ann Rheum Dis 2024; 83 (1): 15–29.
Al Sawah S, Daly R, Foster S et al. SAT0423 understanding delay in diagnosis, access to care and satisfaction with care in lupus: Findings from a cross-sectional online survey in the United States. Ann Rheum Dis 2015; 74: 812.
Daly R, Al Sawah S, Foster S et al. FRI0420 health related quality of life in lupus differs by how patients perceive their health and how often they experience flares: Findings from a cross-sectional online survey in the United States. Ann Rheum Dis 2015; 74: 578–579.
Chen H-J, Wang H, Qiu L-J et al. Relation among anxiety, depression, sleep quality and health-related quality of life among patients with systemic lupus erythematosus: Path analysis. Patient Prefer Adherence 2022; 16: 1351–1358.
World Lupus Federation. Lupus awareness tool kit. Available at: https://worldlupusday.org/tool-kit/. Accessed May 2024.
Lupus UK. World Lupus Day (May 10th). Available at: https://lupusuk.org.uk/world-lupus-day-may-10th/. Accessed May 2024.

Author: Emily Morton | Senior Medical Writer