Lupus, scleroderma and vasculitis have been highlighted today for Rare Diseases Day.
Dr Peter Lanyon and colleagues at the UK’s Rare Autoimmune Rheumatic Diseases Alliance commissioned their report, ‘Reduce, Improve, Empower’, to coincide with Rare Disease Day, held every year on the last day of February.
It states that people living with rare autoimmune rheumatic diseases are facing major obstacles to diagnosis, treatment and lifestyle.
The authors gathered details of more than 2,000 patients across the UK. Nearly half had been suffering from symptoms for more than three years before they were correctly diagnosed. Two-thirds had attended hospital multiple times to get essential treatment and care. Most are not convinced that their care is properly co-ordinated.
Dr Lanyon explains that the UK Rare Disease Strategy was published by the Department of Health in 2013, however, its implementation has tended to overlook rare autoimmune conditions.
He says: "This report demonstrates for the first time the similar needs and experiences of people living with rare autoimmune rheumatic diseases. Lupus, scleroderma and vasculitis can have an overwhelming effect on the quality and length of life. Early treatment for all these conditions is essential, and so the potential delays reported here of three years or more to get a diagnosis are concerning."
He concluded: "These findings are a stark reminder of the challenges that people living with these conditions face, from getting a diagnosis, to accessing treatment and to coping with the impacts on home, work and family life."
The report includes potential solutions linked to three aims: reducing delays in diagnosis, improving coordination of care, and empowering people with greater knowledge.
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