Hard for patients to describe, hard for doctors to diagnose. Above all, difficult to endure as a life companion, due to the lack of effective therapies and the persistence of a social stigma that often leads to trivializing the physical and psychological suffering of sufferers, without realizing how disabling the disease can be, day after day. It is fibromyalgia, a complex and still clinically poorly understood condition characterized by the presence of widespread musculoskeletal pain, even severe fatigue (asthenia), mood and sleep disturbances, which affects about 2 million Italians, mostly women aged 25 to 45.
To promote the recognition and treatment of fibromyalgia syndrome and improve the care of patients (today, often, undertreated, improperly treated or left to their own devices), the Italian Society of Rheumatology (SIR) with the sponsorship of the Ministry of Health has recently established the first “National Registry on Fibromyalgia.” Presented at the 56th SIR National Congress (Rimini Nov. 27-30), this tool should also facilitate research into the disease, promoting the development of targeted treatments, which are lacking today.
“The Italian one is the first European registry of its kind and one of the first worldwide,” stressed Fausto Salaffi, SIR national adviser delegated to problems related to chronic pain diseases. “Nineteen Rheumatology Centers distributed throughout the country participated in its implementation, and in just six months more than 2,000 patients have already been included. The epidemiological and clinical data collected will be able to expand knowledge of the disease, in the hope of improving its diagnostic-therapeutic pathway and encouraging a more personalized approach. Fibromyalgia is the third most common rheumatologic disease in our country and accounts, alone, for 20 percent of all diagnoses we make in outpatient settings. It is, therefore, crucial to be able to perfect care for patients.”
After decades in which the existence of fibromyalgia as a clinical entity was all but denied or attributed to anxious-depressive states, today, especially thanks to the efforts and awareness work done by patient associations and some “enlightened” physicians, the disease is beginning to receive the attention it deserves. In addition to the Registry established by SIR, an important initiative underway for several months is the signature collection, in which many Italian municipalities are participating, aimed at obtaining the recognition of fibromyalgia as a chronic disabling disease by the Ministry of Health and its inclusion in the LEAs (Essential Levels of Care). This is an important recognition not only medically, but also because of the impact on the provision of care to patients.
If you would like to help improve the care and protection of the rights of fibromyalgia sufferers, you can check out the facebook page of the Fibromyalgia Committee United (CFU Italy) – Fibromyalgia News (www.facebook.com/pg/cfuitalia/events/), where the municipalities participating in the signature collection and the periods when you can participate in the petition are indicated. On the same page, major information and awareness events about the disease are listed. For information on fibromyalgia and how to deal with it, you can also refer to the website of the Italian Fibromyalgia Syndrome Association (AISF Onlus): sindromefibromialgica.it/ .
Source: Italian Society of Rheumatology – SIR)(www.reumatologia.it/default.asp)
