Fibromyalgia, Lady Gaga’s disease: the national register is underway

Fibromyalgia, Lady Gaga's disease: the national register is underway

Lady Gagashadow

Almost six million Italians suffer from a rheumatic illness (one in three after the age of 65). Among these, two million, especially women aged between 25 and 45, are affected by fibromyalgia. A little known disease, until not long ago when a star of the likes of Lady Gaga confessed to being a patient , and very painful, of unknown causes, against which really effective therapies have not yet been developed. Hence the need to establish the first national register, a project carried out by the Italian Society of Rheumatology (SIR), under the patronage of the Ministry of Health. The goal is to obtain a tool that allows in-depth scientific research and favors the development of precision medicine.

A diffuse musculoskeletal pain that does not pass

The register was presented on the second day of the SIR National Congress, which brings together over two thousand Italian specialists in Rimini. “For the first time the patient has been placed at the” center “for a new, ambitious and complex project, which has so far seen the active participation of 19 rheumatology centers on the national territory – underlines Fausto Salaffi, national councilor of the SIR and delegate to problems related to chronic pain diseases -. The initiative has made it possible to obtain what is, to date, the largest Italian case history of patients. The epidemiological and clinical data obtained will thus be able to widen the knowledge of the disease, in the hope of improving its diagnostic therapeutic path and encouraging a more personalized approach “.

Over 100 different rheumatic diseases

“Fibromyalgia is the third most widespread rheumatologic disease in our country and alone represents 20% of all the diagnoses we make in the outpatient setting – continues Salaffi -. It is therefore essential to be able to improve assistance to the sick ». Although fibromyalgia is far from rare and has recently had a world-famous testimonial (Lady Gaga in fact), only 24 percent of Italians have heard of it. ” There are more than one hundred different rheumatic diseases, very different in frequency and severity- says Luigi Sinigaglia, National President of SIR -. They are characterized by inflammation of the joints involving all the structures that make up the locomotor apparatus and often also affect the internal organs. Recognizing the symptoms and arriving at a diagnosis as soon as possible is essential to limit the damage and treat the sick better ».

Over 5 million Italians suffer from it
Open a working table with the Ministry

“It will be an excellent opportunity to reaffirm the indispensable role that the rheumatologist must have within the national health system – underlines Guido Valesini, vice president of SIR -. This must be defended and strengthened above all with regard to prescriptive freedom, a right that must always be respected and guaranteed in the interest of both the clinician and the patient “. “We need to deal with administrators and institutions in order to always ensure the availability of innovative therapies,” says Roberto Gerli, president-elect of SIR. With these treatments we can guarantee a good quality to those who are facing difficult and very painful pathologies such as rheumatoid arthritis, psoriatic arthritis or connective tissue diseases “. At the national congress of Rimini the SIR also presents the activities carried out at institutional level in recent months. “Among the citizens, the expectation of care is growing and the request for a dutiful assistance guarantee for the entire duration of the illness – concludes Luigi di Matteo, coordinator of the contributions with the SIR Institutions -. This means that as medical specialists we must take care of the patient from diagnosis to disability management. We have therefore started a working group together with the Ministry of Health to define the DRG appropriateness levels ( This means that as medical specialists we must take care of the patient from diagnosis to disability management. We have therefore started a working group together with the Ministry of Health to define the DRG appropriateness levels ( This means that as medical specialists we must take care of the patient from diagnosis to disability management. We have therefore started a working group together with the Ministry of Health to define the DRG appropriateness levels (Diagnosis Related Groups ) rheumatology. The aim is to safeguard the hospital and university facilities as much as possible. The rheumatic patient must always and only be cared for in dedicated environments, in which specialized and adequately trained medical personnel work. We want to guarantee the sustainability of the national health system, but at the same time know how to respond to the challenges that the growth of the most modern technologies and the new therapies will bring to the state budget “

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