World Lupus Day 2022: Raising awareness and understanding of lupus

World Lupus Day, held annually on 10 May, is a day for lupus organisations, health practitioners, researchers, and individuals with lupus across the world to collectively raise awareness of this incurable condition [2]. Here at Porterhouse Medical Group, we are adding our voice to this initiative by sharing our knowledge about this overlooked and potentially life-threatening autoimmune disease.

What inspired the name for lupus, and how many people are affected?

Lupus is the Latin word for ‘wolf’, and, consequently, the condition is believed to have gained its unique name because of the distinctive shape of the associated facial skin rash, which was once thought to resemble a wolf bite [1]. Severe facial rashes are uncommon nowadays, and, instead, rashes across the cheeks and nose of a patient, known as malar rashes, are likened to the shape of a butterfly [3]. Consequently, a butterfly has become the symbol of LUPUS UK, a charity centred on raising awareness of the condition.

It is estimated that approximately 5 million people worldwide have lupus, with around 50,000 people in the UK alone living with the condition [1]. Despite this, there is a lack of awareness surrounding the condition, which can lead to the misunderstanding that it is contagious. Unfortunately, this stigma can lead to social isolation for those with the disorder [4].

Currently, there is no cure for lupus; however, there is hope for the future, with new therapies being developed and management strategies continuing to be improved.

What is lupus?

Lupus is an autoimmune disorder, which means that the body’s immune system mistakenly mounts an immune response on its own cells due to a triggering event, such as the introduction of emotional or physical stressors or hormonal changes in those who are genetically predisposed to autoimmune responses [5]. This damaging immune response is driven by an overproduction of antibodies which  form complexes that lead to inflammation and tissue damage throughout the body; the sites and/or organs that are damaged affect the array of symptoms that present in the patient [6].

There is thought to be no one single cause of lupus, although research has indicated that a variety of factors may be responsible for driving the overproduction of antibodies, including genetics, hormones, viral infections and stress [7]. The link with hormones means that biological sex also plays a role; although adult males and young children can develop lupus, the condition predominantly affects adult females, with nine out of ten adults diagnosed with lupus being female [8].

How does lupus affect the body?

The effects of lupus on the body are wide and varied, affecting almost every part of the anatomy. Table 1 provides an overview of the extensive range of symptoms that are associated with lupus, which can drastically alter a patient’s quality of life [9].

Table 1. The possible effects of lupus [10]

Affected organ/system/site Possible effects
Brain and nervous system
  • Mood swings
  • Difficulty processing thoughts
  • Headaches
  • Memory loss
  • Stroke
  • Gritty eye sensation
  • Inflammation of the sclera
  • Changes in retinal blood vessels
  • Damage to nerves that control eye movement
  • Cataracts
  • Vision loss
  • Changes to the skin around the eye
  • Mouth sores
  • Dryness
  • Swelling
  • Yeast infections
  • Red butterfly rash
  • Sores
Blood and blood vessels
  • Anaemia
  • Thrombosis
  • Vasculitis
  • Thrombocytopenia
  • Leukopenia
  • Neutropenia
  • High blood pressure
  • Heart disease
  • Heart abnormalities
  • Coronary heart disease
  • Heart attack
  • Pleurisy
  • Pneumonitis
  • Chronic diffuse interstitial lung disease
  • Pulmonary embolism
  • Lupus nephritis
  • Blood in urine
Gastrointestinal system
  • Trouble swallowing
  • Gastro-oesophageal reflux disease
  • Nausea and/or vomiting
  • Constipation
  • Peritonitis
  • Pancreatitis
  • Peptic ulcers
Bones and muscles
  • Joint pain
  • Muscle pain
  • Tendonitis
  • Bursitis
  • Carpal tunnel syndrome
  • Osteoporosis
  • Swelling of feet, ankles, legs and hands
Reproductive system
  • Higher risk of miscarriage
  • Higher risk of premature birth
  • Higher risk of pre-eclampsia

How is lupus diagnosed?

Lupus can be hard to diagnose because its symptoms are shared across a multitude of different conditions; typical misdiagnoses often include leukaemia, muscular dystrophy and multiple sclerosis [11]. The length of time to receive a diagnosis is typically six years, which can be disheartening for patients experiencing discomfort due to the condition [12]. There are several tests that can be conducted to aid a diagnosis of lupus, but no singular test is conclusive [13].

When a patient presents to their doctor with suspected lupus, the first diagnostic test offered is a blood to detect the level of antinuclear antibodies (ANA); these antibodies are responsible for attacking and damaging healthy cells [13]. Whilst no singular test is conclusive, a positive ANA test result is the strongest indication, along with the presence of key symptoms, such as skin rashes and joint pain,  for a diagnosis of lupus to be confirmed. Urine tests are commonly used as an additional indicator of lupus. Less common tests include complete blood counts, erythrocyte sedimentation rate tests and kidney and liver function assessments. If a doctor suspects that lupus is affecting the lungs of a patient, they may request a chest X-ray to detect the presence of fluid or inflammation. Echocardiograms are also useful to check the health and function of the valves of the heart [13].

Despite the difficulties of reaching a diagnosis, early detection is important to enable the patient to manage their symptoms and initiate treatment without delay to prevent organ and/or system damage.

How is lupus treated?

Although there is currently no cure for lupus, there are a range of treatments that can aid in managing the broad spectrum of symptoms. Treatment for lupus predominantly focuses on combatting the inflammatory processes that drive the disease and, if offered early enough, can prevent permanent damage to affected organs and/or systems.

Medications commonly used to control lupus include non-steroidal anti-inflammatory drugs (such as ibuprofen),  antimalarial drugs (such as hydroxychloroquine) and corticosteroids (such as prednisone) [14]. These aim to tackle the chronic inflammation and flare-ups associated with the condition.

Immunosuppressants, such as azathioprine, mycophenolate, methotrexate, cyclosporine and leflunomide, are sometimes used in more serious cases of lupus [15]. However, they are associated with side effects such as increased risk of infection, liver damage, decreased fertility and an increased risk of cancer. Immunosuppressants may also increase photosensitivity [16], which can be problematic for those already suffering skin issues because of lupus.

How is lupus self-managed?

As well as therapeutic approaches, simple measures (such as those detailed in Table 2) can be taken to help manage lupus symptoms [17].

Table 2. Simple measures to self-manage lupus symptoms [17, 18]

  • Visiting a doctor regularly enables symptoms to be monitored and helps prevent flare ups.
  • Limiting ultraviolet exposure is important for preventing rashes and sores.
  • Wearing protective clothing and using sunscreen with a sun protection factor of at least 55 when outdoors is recommended.
  • Taking regular exercise can help to maintain strong bones and reduce the risk of heart attacks.
  • Consuming a healthy diet can be a good way to maintain cardiovascular health and can be linked to regular hormone control, as oestrogen is involved in the immune response and therefore autoimmune responses.
  • Consuming polyunsaturated fats, from sources such as salmon and flax seeds, has been linked to the suppression of inflammation associated with lupus.
  • Avoiding smoking can help to decrease the risk of cardiovascular disease and the inflammation of blood vessels, which are both conditions associated with lupus.
  • Taking vitamin D supplements may benefit people with lupus, who may have reduced vitamin D levels from increased efforts to avoid sun exposure.


Are there any future treatments for lupus in development?

Drugs that are licensed for other conditions are undergoing clinical trials in lupus; however, a front runner in the search for treatments is stem cell therapy. The technique of using stem cells works on the premise of eliminating the faulty immune system and replacing it with a functional, healthy immune system. Mesenchymal stem cells are being investigated as they possess immunosuppressive properties and may also be involved in preventing autoimmunity [19]. If successful, this approach may provide a disease-modifying treatment, rather than simply tackling the symptoms.

Further resources regarding lupus can be found at LUPUS UK [1].

The information in this article is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content is for general information purposes only. Always seek the guidance of your doctor or other qualified healthcare professional with any questions you may have regarding your health or medical condition.



  1. LUPUS UK. What is lupus? Available at:,about%201%20in%201000%20people.. Accessed May 2022.
  2. World Lupus Federation. About. Available at: Accessed May 2022.
  3. LUPUS UK. The symptoms. Available at: Accessed May 2022.
  4. LUPUS Foundation of America. International survey shows low global understanding about lupus. Available at:,comfortable%20hugging%20someone%20with%20lupus. Accessed May 2022.
  5. LUPUS UK. The triggers. Available at: Accessed May 2022.
  6. John Hopkins Lupus Center. How lupus affects the immune system. Available at: Accessed May 2022.
  7. WebMD. What causes lupus? Available at:,which%20causes%20chickenpox%20and%20shingles. Accessed April 2022.
  8. Pons-Estel GJ, Alarcón GS, Scofield L et al. Understanding the epidemiology and progression of systemic lupus erythematosus. Semin Arthritis Rheum 2010; 39 (4): 257–268.
  9. Olesińska M, & Saletra A. Quality of life in systemic lupus erythematosus and its measurement. Reumatologia 2018; 56 (1): 45-54.
  10. Medical News Today. What is my life expectancy if I have lupus? Available at: Accessed April 2022.
  11. Rodgers L. 7 conditions that can mimic lupus (and delay your diagnosis) Available at: Accessed May 2022.
  12. Al Sawah S, Daly RP, 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.
  13. Rodgers L. Getting a lupus diagnosis: How doctors diagnose lupus. Available at: Accessed May 2022.
  14. NHS. Lupus. Available at: Accessed May 2022.
  15. John Hopkins Lupus Center. Treating lupus with immunosuppressive medications. Available at: Accessed May 2022.
  16. Berge LAM, Andreassen BK, Stenehjem JS et al. Use of Immunomodulating Drugs and Risk of Cutaneous Melanoma: A Nationwide Nested Case-Control Study. Clin Epidemiol. 2020; 18 (12): 1389-1401.
  17. Mayo Clinic. Lupus: Diagnosis & treatment. Available at: Accessed April 2022.
  18. Charoenwoodhipong P, Harlow SD, Marder W et al. Dietary omega polyunsaturated fatty acid intake and patient‐reported outcomes in systemic lupus erythematosus: The Michigan Lupus Epidemiology and Surveillance Program. Arthritis Care Res (Hoboken) 2020; 72 (7): 874–881.
  19. Li A, Guo F, Pan Q et al. Mesenchymal stem cell therapy: Hope for patients with systemic lupus erythematosus. Frontiers in Immunology 2021: 12

 Author: Victoria Hill. PhD Placement Student. Porterhouse Medical