The Italian Fibromyalgia Syndrome Association was created to meet the needs of the fibromyalgia patient
More attention to fibromyalgia. This is not an imaginary disease, but a picture that can greatly affect health and well-being. For this reason it is hoped to obtain the inclusion of the pathology in the LEA (Essential Levels of Assistance) and to give the right attention to a pathology recognized only in theory, given that only in some regions the sick are "granted" certain services by the Health Service National.
Why it is important to move together
Giving voice to the often unacknowledged needs of fibromyalgia sufferers. This is the primary objective of the Italian Fibromyalgia Syndrome Association (AISF Odv). "The association was created to manage the fibromyalgia problem and is made up of healthcare personnel and patients" explains Giusy Fabio, vice president of AISF Odv. “We aim at the recognition of the syndrome and its inclusion in the LEA. We also want to ensure correct patient education regarding their illness and train health personnel in a correct diagnosis and an appropriate profile in the therapeutic strategy ". In this sense, the association develops and strengthens projects that in the field of health care give support that responds to the needs of the fibromyalgia patient, improving their quality of life, as well as assisting and guiding the patient in the difficult path of diagnosis and treatment of fibromyalgia syndrome.
"We offer listening, help and defend the rights of patients, ensuring that they are adequately protected in their diagnostic and therapeutic path", Giusy Fabio continues. “To inform people about the fibromyalgia syndrome, we produce support material, both in print and online. Among these, in particular, two publications: Kaleidoscope, which reports the news of the association and Fibromyalgia Italia, which aims to disseminate scientific and practical news for the life of the fibromyalgia patient. Finally, we organize courses on non-pharmacological treatment strategies and conferences to update not only patients, but also doctors ”.
Hopes for the future
Breaking the veil on fibromyalgia, therefore, is crucial. But everyone's commitment is needed, both to raise funds that allow us to be more incisive, and to recruit patients willing to work as volunteers. “The volunteer is very useful and indispensable but we need an economic basis that allows us to maintain a high level of professionalism even in the field of voluntary associations” concludes Giusy Fabio. Patients arrive at a diagnosis late, sometimes even after years, with a considerable waste of money and time; they are not understood and considered, not only by doctors very often, but also by their families and those around them; very often they lose their jobs, because they have no protection; they lose everything, even their dignity because with a disease like fibromyalgia, you no longer know what, how and what you will do ".
With the non-conditioning sponsorship of Alfasigma S.p.A.
Tag: Degenerative diseases