Lupus is on the rise, yet awareness of the disease remains relatively low, however, efforts are underway to tackle existing gaps in managing the condition
According to Versus Arthritis, lupus is an autoimmune disease, which basically means that the immune system produces antibodies that attack the body’s own tissues, causing inflammation. The two main types of lupus are discoid lupus and systemic lupus erythematosus (SLE) – the focus of this article will be on the latter.
By way of introduction, we know that systemic lupus erythematosus (SLE) is the most common form of lupus, affecting approximately 70% of the estimated 5 million people with lupus worldwide.
SLE is a chronic, incurable autoimmune disease that affects many organs and systems of the body, including the skin, joints, lungs and kidneys.
SLE is more common in younger people; only about one in 15 cases begin after the age of 50. It is around nine times as common in women as in men and is more common in women of Chinese, African and Caribbean origin.
The signs and symptoms of SLE vary but can include “butterfly” rash across the cheeks and bridge of the nose is also a characteristic feature of the disease.
Around a third of people with SLE develop the kidney disease nephritis. Heart problems can also occur, including inflammation of the membrane around the heart and abnormalities in the valves that control blood flow.
In addition, inflammation associated with SLE can damage the nervous system and cause seizures, stroke and difficulties with processing, learning and remembering information.
People living with SLE experience periods of exacerbation and remission but over time, SLE gets gradually worse and damage to the major organs can be life-threatening.
Anxiety and depression are commonly associated with SLE. Indeed, a global survey by the World Lupus Federation to mark World Lupus Day on 10th May this year found that the psychological impacts of the disease can be as devastating as the physical. Nearly two-thirds of respondents (61.6%) said living with SLE had a major impact on their emotional and mental wellbeing.
Another report released to coincide with World Lupus Day warned that although progress has been made in managing lupus, there is still a lack of awareness about the condition among both the general public and healthcare practitioners, which can lead to people with lupus feeling misunderstood, isolated and alone. In one global survey, 51% of respondents did not know lupus is a disease.
The report, A Vision for Lupus, published by pharmaceutical firm GSK, included three “calls to action”:
- Raising awareness of lupus among the public, people living with the disease, their families and healthcare providers to achieve early diagnosis and help people with lupus to feel more acknowledged, understood and supported.
- Improving access to specialist and multidisciplinary lupus clinics to ensure quality care that addresses all aspects of the disease.
- Raising awareness of ongoing clinical trials, encouraging people with lupus to consider taking part in research and facilitating easier access to these trials. In turn, people with lupus should be empowered to make autonomous decisions about managing their condition.
The report concludes that the increasing prevalence of lupus indicates it is no longer a rare disease. It is, therefore, more important than ever to address the gaps in its management.
Open Access Government
Editor's Recommended Articles
Must Read >> Modern research into rare diseases
Must Read >> Five rare diseases you never knew existed
Must Read >> Access to rare disease therapies in Europe
Must Read >> The impact of clinical research in rare diseases