Psorasic arthritis, ‘Give me 6 words’ campaign to give patients a voice

Six words to describe life with psoriatic arthritis, a chronic inflammatory disease that can affect people already with psoriasis usually within 4 years of diagnosis, but can also occur earlier and independently. Six words that will inspire an original song signed and interpreted by the singer-songwriter Virginio, star of ‘Amici’, telling fragments and aspects of life of the people who live with this pathology. It’s the ‘Give me 6 words’ campaign. The story of psoriatic arthritis’, promoted by Amgen in collaboration with the National Association of Rheumatic Patients (Anmar) and the National Association of People with Rheumatological and Rare Diseases (Apmarr). The campaign relies on music to raise awareness and inform about a still little known pathology, to foster the doctor-patient relationship, in particular with the rheumatologist who defines the diagnosis and possible treatments. From today until August 6, on the website www.6domini.it, patients will be able to choose the 6 words that best describe their experience of living with the disease. A jury made up of representatives of the patient associations and Virginio will select the 6 most representative words, which will inspire the composition of the musical piece and also an informative podcast dedicated to psoriatic arthritis. “Psoriatic arthritis – explains Roberto Caporali, full professor of Rheumatology at University of Milan – is a heterogeneous pathology that can affect up to 6 articular, skeletal domains or manifestations, as well as the skin domain. Its symptoms, starting with pain, have important repercussions on the patient’s life and compromise in quality of life, hindering participation in work, social and family activities. This disease is still underdiagnosed and untreated, mainly due to the underestimation of symptoms and the delay in referring the patient to the rheumatologist. In patients with psoriasis complaining of the first manifestations of an arthritis, the rheumatologist and the dermato logo have a key role in the patient’s diagnostic path. “” Late diagnosis, failure to take charge and untimely treatment could have a negative impact on the future of the patient’s life, inexorably changing it – says Antonella Celano, president of Apmarr – It is desirable enhance a greater awareness of the patient in order to empower him and make him an active part of the treatment path. Today the rheumatologist has the means to promptly diagnose and treat psoriatic arthritis with effective drugs and it is therefore essential that he knows how to recognize the symptoms “.” People affected by psoriatic arthritis are mostly young and in the midst of productive activity and this amplifies the extent of the repercussions of the disease – highlights Silvia Tonolo, president of Anmar – According to our survey of a few years ago, but still valid, conducted in collaboration with the INPS, at least 24 million working days are lost every year due to this disease. For psoriatic arthritis the rates of disability, estimated at 50%, are fixed at 1992 and in practice the patient has neither economic rights nor disease “. The management of chronic diseases such as psoriatic arthritis” needs to look at the patient in a complete way from prevention to diagnosis, from the treatment path to the overall impact of the disease – declares Maria Luce Vegna, medical director of Amgen Italia – This is the premise that led us to realize, in addition to the awareness campaign ‘Give me 6 words. The story of psoriatic arthritis’, concrete initiatives in support of assistance closer to the daily needs of the patient. We have encouraged the establishment of multidisciplinary teams and privileged paths that connect basic medicine with dedicated specialist centers, helping to improve the quality of life of patients “. Music” creates the opportunity to move consciences and open worlds on stories left in the shadows. It is an artistic vehicle that unites people and promotes sharing “, says Virginio, testimonial of the campaign, who says he has chosen to join” to help tell the needs of those who face an unrecognized disease and to raise awareness of those who suffer from it. unknowingly, because he has not yet received a diagnosis. For an artist, every single word can be a source of inspiration. The words chosen by patients with psoriatic arthritis, which will arise from their need to tell about themselves, to feel understood, to reaffirm that the pathology they live with concerns them but does not define them, may be even more so for me. ”