Research carried out by the charity LUPUS UK shows that, on average, British people with systemic lupus erythematosus (SLE) wait 7 years for a diagnosis from the time first symptoms appear, and some have waited more than 9 years. The findings, published in the journal Lupus, also show that almost half of people in the United Kingdom who had received a diagnosis of lupus had previously been given a different diagnosis.
The most common were rheumatoid arthritis (36.7%), chronic fatigue (16.1%), skin disorders (11.2%) and a chronic psychological disorder (10.8%). In total, chronic fatigue, fibromyalgia and psychological problems contributed to almost one-third (26.9%) of all prior diagnoses. Almost 54% (n=1360) of respondents reported suffering frequently from between 6 and 10 different symptoms. Fatigue and weakness were experienced by 91% and 77.4% had regular joint pain or swelling.
Almost 10% of those surveyed had lupus nephritis and 10% had antiphospholipid/Hughes’ syndrome. Close to 12% had connective tissue disease and 10.6% had discoid lupus. 20% had problems walking or were in a wheelchair, and 27.3% reported extreme pain and discomfort. Almost 73% said they had some problems or were unable to carry out their usual activities, and 19.9% experienced extreme anxiety or depression.
The findings provide important insights into the personal burden of the disease in everyday living and highlights areas for further research. “This survey suggests a clear agenda for further patient-focused research to improve awareness of SLE, identify better, more effective therapies and improve support for patients to improve overall quality of life,” the authors say.