Fibromyalgia, Aisf volunteers on the top of the Vulcano crater advocating for the rights of patients.

Last Updated: July 24, 2023

Fibromialgia, i volontari della Aisf sulla cima del cratere di Vulcano per i diritti dei malati

#Palermo
The light from the crater fire on the island of Vulcano is shining a spotlight on fibromyalgia and the rights of patients. A group of volunteers from the Italian Fibromyalgia Syndrome Association (Aisf), led by vice president Giusi Fabio, climbed the volcano to raise awareness about this condition, which affects around 2.5 million Italians, and the needs of these patients who are deprived of their right to treatment and health care.

The disease, whose triggering factors are still unknown, causes widespread muscle pain, sleep disorders, irritable bowel syndrome, and fatigue. Debilitating and invisible, those affected do not have access to diagnostic, treatment, and rehabilitation pathways for the disease at every stage of its clinical manifestation. So, the objective is to remind the institutions of their duty, and the association has done so through this striking act. “This program, which involves the fundamental elements of nature – air, water, earth, fire,” explains Fabio, “started in 2019 with the journey along the Via Francigena. From there, it continued to raise awareness in the community, meeting patients and, above all, making our presence felt with even more striking actions in order to shine a spotlight on the condition and the needs of the patients. We then continued with the sailing trip in 2021, docking in ports and having meetings with the administration and patients to make our voice heard, and then with the paramotor, also in 2021.”

Now it is the turn of fire, symbolizing the burning sensation that the disease often causes in patients. “The Sicilian regional assembly and therefore the Sicilian Region,” emphasizes the vice president, “have contributed, both for free and at a cost, to support the endeavor, considering that the Region has always shown great attention to the patients and the association.”

Supporting the initiative is also Professor Piercarlo Sarzi Puttini, president of Aisf and professor of Rheumatology at the University of Milan. “We continue with our strategy of events that can make the condition better known and increase political attention for certain services covered by the national health system,” he emphasizes. “This initiative was born from Aisf to raise awareness among the public opinion, but also the medical and political classes, about a condition that is not yet recognized and is not sufficiently managed by the National Health Service.” On the island, the volunteers were welcomed by the delegate of the Mayor of Lipari, Gilberto Iacono. The municipal administration has strongly supported the association’s initiative, given the many residents of the Aeolian Islands who have contributed to raising awareness among local institutions about this serious problem. “I have embraced this initiative,” emphasizes Iacono, “because it carries a strong message of awareness about fibromyalgia; raising awareness through climbing the crater, therefore with a physical test, in a way to be able to shout from the summit of a crater and give more strength to the message of being heard.” This gesture did not go unnoticed and prompted Undersecretary of Health Marcello Gemmato to make a promise: “Beyond parliamentary commitment, as soon as it is possible to update the Essential Levels of Assistance (Lea), following the approval of the tariff decree that occurred about two months ago,” says Gemmato, “the evaluation will be made to include severe fibromyalgia syndrome in the list of chronic and disabling diseases that entitle patients to exemption from cost sharing for services.”