Patient Information

Source: European Reference Network

Systemic Lupus Erythematosus (SLE)

SLE is the paradigm of systemic autoimmune diseases characterized by a wide spectrum of clinical manifestations with an unpredictable relapsing-remitting course. SLE typically affects young women between 16 and 55 years and may involve almost all organs and tissues.

Some of the most common clinical features are: mucocutaneous lesions, articular manifestations, renal involvement, haematological disorders, serositis and fever. 40-70% of SLE patients present lupus nephritis (LN) whose dominant feature is proteinuria usually associated with urinary sediment abnormalities. In most severe cases LN may result in chronic renal failure.

Neuropsychiatric manifestations can also be present and they include several symptoms such as headache, seizure disorder, psychosis, acute confusional state and cognitive dysfunction. A higher rate of mortality and morbidity is described among patients with renal and neuropsychiatric involvement.

The serological picture of SLE is characterized by the positivity of many autoantibodies among which the most specific are anti-dsDNA and anti-Sm. The presence of antiphospholipid (aPL) antibodies in all SLE patients is associated with a worse prognosis. During SLE course patients may develop both disease- and treatment-related damage; although the better use of the available therapies has greatly improved SLE patients’ outcome, the disease is still associated with a significant morbidity.

For useful references, kindly refer to the European Reference Network: reconnet.ern-net.eu/disease_SLE/

Patient Organisations

Lupus Europe is the European umbrella organisation that brings together national lupus patient organisations from across Europe. They are a non profit independent organisation. They aim to support and empower their national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. They also work tirelessly to improve access to healthcare for all lupus patients, advocating on their behalf at EU level. They use the WHO (World Health Organisation) definition of Europe as a region, rather than a political entity.