“I started suffering at 16, the diagnosis came when I was 24. I spent eight years of my life being told that I was hypochondriac, that everything was in my head”. To speak is Giorgia Soleri, model by profession and companion of Damiano David – frontman of the Maneskin – in life.
The pain he talks about is Vulvodynia, a disabling disorder that manifests itself with severe pain in the vagina. Vulvodynia was discussed today in the Chamber of Deputies, where a bill was presented for the recognition of the disease and to implement some measures in order to provide assistance to those who suffer from it.
Concrete support, made up of screening and treatment paths. “I spent tens of thousands of euros to heal myself”, continues Giorgia Soleri, “I could only do it thanks to the support of my family and my partner”. The numbers of people suffering from this disorder is not yet certified, the Vulvodynia and Neuropathy of Pudendal Committee asks with the bill to start a research to obtain certain data: “We are talking about a 10-15% incidence”, explains Silvia Carabelli, from the Committee.
“There are drugs, but today they are all prescribed off-label, so you pay in full despite the medical prescription”, adds Carabelli. Furthermore, the treatment times can also be very long and the expense unsustainable for many families, “we are talking about 300-500 euros spent per month”.
Hence the law proposal which provides, first of all, for the recognition of vulvodynia and pudendal neuropathy in the essential levels of care as chronic and disabling diseases. The disease in fact, “it does not allow you to sit for long, even just an hour becomes an unbearable time for those with pain“, explains Giorgia Soleri. The second point contained in the bill provides for the identification of regional public reference centers for the correct treatment of pelvic pain.
And again: the exemption from participation in public spending for the reactive health services, the establishment of a national commission aimed at issuing the guidelines for therapeutic and assistance diagnostic paths, the establishment of a specific national fund, the establishment of a national register for data collection, the promotion of specific medical training on the subject, the provision of funding for research support, facilitated access to teleworking and smart working for male and female workers and an increase in sick leave in relationship to the severity of the disease.
Attention also to female students and students, with facilitated access to distance learning. Finally, there will be the promotion of awareness-raising, information and primary prevention activities in schools and the establishment of a national day for Vulvodynia and pudendal neuropathy.
The bill was signed by a large representation of the parties in Parliament, but the deputy Giuditta Pini warns about the difficulties of the law process: “I could tell you: this law will soon see the light. But that would be a lie“, explains the representative of the Democratic Party.” Prevention in this country pays off. With us you can find the money to renovate the houses with the 110% bonus and not for the prevention of diseases. It is neither right nor taken for granted that those who are ill should suffer and do so in silence “, adds Pini for whom the law has the advantage of shining a light” on diseases of which they know relatively little. The journey, however, has only just begun “.
Also present at the press conference was Damiano who, to the reporters, explained that he was participating as an ally, to give my support as much as possible. The real work, however, is done by all the girls2 of the Committee “who are incredible girls. Today is Giorgia’s day and her press conference. We just have to hope for the best, because politics take its course”.