World Lupus Day 2020: Raising awareness on behalf of the 5 million people around the world living with lupus

World Lupus Day

 

Sunday 10 May marks World Lupus Day 2020. This annual awareness day is organised by the World Lupus Federation with support from over 200 patient advocacy groups [1]. Here at Porterhouse, we are delighted to support this initiative and do our part to increase public awareness of lupus with this article about the often overlooked condition.

Lupus is a chronic autoimmune disease affecting approximately 5 million people globally [2]. The exact cause of the disease is not fully understood, but it is known to be partly genetic, as more than 20% of those with lupus have an affected parent or sibling [2].

The symptoms of lupus are non-specific and can vary between patients; therefore, diagnosing the disease is notoriously difficult and it is frequently mistaken for other conditions at clinical assessment [3]. Lupus has a higher prevalence in women than in men, and symptoms most commonly begins between the ages of 15 and 45 years [4, 5]. There are four different types of lupus, but the most common, comprising 70% of cases, is systemic lupus erythematosus (SLE) [2].

World Lupus Day 2020

 

 

The symbol often used to symbolise lupus is a butterfly, which represents the distinctive butterfly-shaped facial rash often seen in those with lupus.

 

In autoimmune diseases, the immune system produces antibodies against its own cells (autoantibodies), which essentially results in the body attacking itself. In lupus, these autoantibodies cause an increase in the formation of pathogenic immune complexes, which cannot be removed by the dysregulated immune system; this leads to their accumulation in connective tissues throughout the body, resulting in widespread inflammation [6]. This inflammation is particularly damaging in the joints and in the glomeruli of the kidneys, causing lupus arthritis and lupus nephritis, respectively [6, 7].

Lupus arthritis is one of the most common comorbidities of lupus and occurs predominantly in the hands and wrists, causing pain, stiffness and swelling in the joints [5]. Lupus nephritis is one of the most severe comorbidities of lupus and can lead to end-stage kidney disease and kidney failure, which means it accounts for a significant proportion of lupus-related mortalities [7]. Patients with lupus also experience symptoms such as fever, muscle pain, fatigue, and skin rashes (particularly the distinctive butterfly-shaped rash [malar rash] across the cheeks that is seen in 30%–60% of patients) [5, 6]. Although those with lupus can often lead relatively normal lives, the accumulated damage to organs caused by the disease can affect both life expectancy and quality of life. Additionally, lupus appears to accelerate the rate of atherosclerotic cardiovascular disease, and both the disease itself and the immunosuppressive medications used to treat it can increase a patient’s susceptibility to infection [7].

Living with lupus is challenging for all patients, yet the highly variable nature of this condition means that some patients only have mild symptoms, whereas others are much more severely affected [5]. Additionally, many people with lupus experience periods known as ‘flares’ (in which symptoms worsen) interspersed with periods of remission (in which symptoms are minimal) [7]. Patients with lupus often have to make significant lifestyle changes to manage their disease; fatigue can cause lupus symptoms to flare up and exposure to sunlight can exacerbate skin-related lupus symptoms, so strenuous activities and time spent outdoors must both be limited accordingly [5]. Other aspects of daily life can also be difficult for those living with the condition; for example, 43% worry about physical inactivity and social isolation [8].

Because there is no single definitive diagnostic test for lupus, and because symptoms and their severity can vary widely, diagnosis of lupus is difficult. In fact, a LUPUS UK survey found that the average time from the onset of symptoms to diagnosis was seven years [3, 5]. There is no cure for lupus and, as previously mentioned, the causal mechanism of the disease is still not fully understood [5], which makes the development of targeted therapies very challenging. Therefore, the treatments that are available focus on suppressing the immune system, managing symptoms, and reducing the severity of comorbidities [7].

Public awareness of lupus and the impact that it has on the lives of those who are affected by it is low, as displayed by a global opinion survey in 2018 that found that 51% of respondents did not know that lupus was a disease [9]. Additionally, some of those who did recognise lupus as a disease mistakenly believed that is it contagious – misunderstandings like this can lead to unnecessary social stigma for patients with lupus [9].

Patient support groups play a key role in enabling patients with lupus to connect with each other, helping them to share daily experiences of managing their condition, handling potential stigmatisation, and reducing the social isolation that can accompany the disease. The medical difficulties associated with diagnosing and treating a poorly understood disease have a negative impact on those with lupus, which is further compounded by a low level of public understanding and the fact that most symptoms of lupus are not visible to others. Unfortunately, this can lead to a great emotional burden for patients. The aim of World Lupus Day is to tackle some of these problems by aiding patient support groups, raising public awareness, and increasing the number and availability of resources devoted to supporting and treating patients with lupus.

 

References

  1. Lupus Foundation of America. Emotional support and clinical trial volunteers are the focus for World Lupus Day 2019. Available at: https://www.lupus.org/news/world-lupus-day-2019. Accessed May 2020.
  2. World Lupus Day. Lupus facts and statistics. Available at: https://worldlupusday.org/lupus-facts-and-statistics/. Accessed May 2020.
  3. LUPUS UK. September’s topic of the month – getting a diagnosis of lupus. Available at: https://www.lupusuk.org.uk/getting-diagnosed/. Accessed May 2020.
  4. Fava A and Petri M. Systemic lupus erythematosus: Diagnosis and clinical management. J Autoimmun 2019; 96: 1–13.
  5. World Lupus Federation. Lupus knows no boundaries e-report. Available at: https://worldlupusdayorg.files.wordpress.com/2019/05/lupus_knows_no_boundaries_e-report_en.pdf. Accessed May 2020.
  6. Munroe ME and James JA. Genetics of lupus nephritis: Clinical implications. Semin Nephrol 2015; 35 (5): 396–409.
  7. Putterman C, Caricchio R, Davidson A et al. Systemic lupus erythematosus. Clin Dev Immunol 2012; 2012: 437282.
  8. World Lupus Day. Inactivity, isolation and impact on daily life top concerns of lupus warriors. Available at: https://worldlupusday.org/news/inactivity-isolation-and-impact-on-daily-life-are-top-concerns-of-people-with-lupus/. Accessed May 2020.
  9. World Lupus Federation. 2018 World Lupus Day Survey: Key survey findings. Available at: https://worldlupusdayorg.files.wordpress.com/2019/05/key-survey-findings-2018-05-09-1.pdf. Accessed May 2020.