• Mon. Jan 17th, 2022

Bva Doxa survey, for rheumatic patients, diagnostic delays and work at risk

Byeditorial

May 27, 2021

The long time, up to 10 years, to arrive at an official diagnosis, pain as a constant conditioning of everyday life and strong consequences on working life and the common feeling of having an ‘invisible’, underestimated and unrecognized disease. These are some of the most frequent themes that emerged from the analysis of online conversations between patients with rheumatic diseases, conducted by the Bva Doxa Institute, presented today during the streaming press conference “The invisible pain”, organized by Anmar (National Association of Rheumatic Diseases) with the contribution of AbbVie. The research, which for two years polled posts and interactions online on blogs, forums, online news and on the main social networks, returns a photograph of the conversations of people living with ankylosing spondylitis and psoriatic arthritis – chronic inflammatory diseases that affect over 850 thousand Italians – and arises from the need to make the voice of rheumatological patients heard. “For people with ankylosing spondylitis and psoriatic arthritis, pain has a devastating impact on life, but it is often experienced as a socially invisible pain, with unrecognized and protected problems in the social, work and welfare fields – explained the president of Anmar. Silvia Tonolo – relatively young people, as the onset peak of the two pathologies is between 25 and 40 years, who due to the disease give up projects, relationships and a professional career, forced to live at the mercy of pain “.” The employment issue represents one of the main critical issues in the life of many patients – Tonolo emphasizes – persistent pain complicates the normal performance of work, to the point that some patients are forced to resign; the need that emerges from online conversations is to receive more information along the diagnostic-therapeutic path and in particular on welfare measures in the workplace and assistance which, however, in the eyes of patients, seem to underestimate the severity and disabling nature of these pathologies ” .

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