“The state recognizes vulvar pain as a chronic and disabling disease”: Giorgia Soleri and Damiano De Manskine in the conference – video

“We ask that Volvodynia and the pudendal neuropathy It is recognized as Chronic Disability DiseasesThe costs of these two syndromes are not yet covered by the National Health Service.” This is a request that comes from the Commission on Vulval and Vulval Neuropathy, which today presented the bill in Rome during the conference “Vulvodynia and pudendal neuropathy: pain without a sound.” The goal is to include the two syndromes in Basic Levels of Assistance (LEA) Also in attendance was Damiano de Maneskine, who accompanied his girlfriend, Giorgia Soleri, who spoke on social media of her suffering from vulvar pain.

They intervened in the conference to support the proposal Berpaolo CeleriUndersecretary of the Ministry of Health Annamaria BarnettChairman of the Senate Hygiene and Health Committee, Marie Lucia LorevisAnd the Chairman of the Chamber’s Social Affairs Committee and representatives of various political forces. Specifically, Parente said that it is ready to carry out, together with the organizing committee and the promoter of the conference and the bill, the process of recognizing the two syndromes also at the institutional level, in an effort to obtain resources starting, first of all, under the upcoming budget law. Sileri also expressed support for the Ministry of Health, pledging to create a fund similar to the 2020 Endometriosis Treatment Fund. In turn, Loreyves undertook to schedule the bill for recognizing the two syndromes.

During the conference, a letter sent by Education Minister Patrizio Bianchi, which expressed interest in introducing a course on pelvic pain to schools as part of health education projects, was also read. Indeed, in addition to health professionals, there are also many patients and activists, such as model Giorgia Soleri who, after talking about her dangerous delay in diagnosis and the high costs incurred by those with both syndromes, concluded by saying: “Article 32 of the Constitution protects health as a fundamental right of the individual and in the interest of society. It guarantees free medical care to those in need. That is why I am here today asking myself: Why does the state not consider us as individuals?”

The proposed law provides for recognition of vulvar pain and pudendal neuropathy at basic levels of assistance as chronic and disabling diseases, designation of a specialized public center in each region, exemption from participation in public spending for health-related services, and creation of a national committee aimed at issuing guidelines for diagnostic treatment assistance plans allocating the resources of the National Fund created under the same proposal, establishing a national registry for data collection, promoting mandatory medical training, funding research support, facilitating access to remote work and smart work for male and female workers and increasing sick leave based on disease severity, primary prevention activities in schools, Awareness and information campaigns, and the establishment of a national day. r vulvitis and pudendal neuropathy.

The proposal was written by the Committee “Vulvodynia and Neuropathy”, which includes the six associations dealing with these two syndromes in Italy (AIV – Italian Association of Vulvodynia Onlus, AINPU Onlus – Italian Association of Neuropathy in Bodendal, Casa Maternità Prima Luce – Project Vulvodynia Help Group , Cistite.info APS, Association Vulvodiniapuntoinfo Onlus, VIVA Association – Winning Together Vulvodynia), by patients with diseases on their skin every day and by professionals who have distinguished themselves in the national territory for their commitment to research and treatment of these diseases. The committee said, “These diseases are not rare, yet they are not recognized by medical staff and society – there is currently a gap in the role of the state and health services in treating these syndromes, which prevents access to them. In many cases. Trained professionals in public facilities, high costs of treatment protocols, high delays in diagnosis caused by invalidation of symptoms, perceived as psychosomatic disorders, or due to incorrect diagnosis.The consequences for quality of life are very high, so it is time for the state and the NHS to recognize All this and take on their responsibility: these diseases exist and can be cured, they are not on our minds. ”