Adnkronos Rome, Nov. 17 (Adnkronos Salute) – As an association, we've been thinking about this project for some time. We finally had the opportunity to make it happen thanks to our collaboration with GSK, which has shown great commitment and sensitivity to the topic. I believe it's a very important initiative because it manages to describe the disease from different perspectives: that of the patients, of course, but also that of the doctors who treat them every day – professionals who are members of our scientific board and know the reality of our association's patients very well – and finally that of the institutions, which have been involved and invited to reflect and take a stand on these issues.
This is how Francesca Torracca, president of the Churg Strauss Syndrome Patients Association (Apacs) Aps, describes the value of the White Paper 'Life Stories with Egpa' dedicated to eosinophilic granulomatosis with polyangiitis, a rare autoimmune disease that affects small and medium-sized blood vessels, causing inflammation and damage to various organs.
This is "a significant step in the history of our association," Torracca continues. "This document is not only rich in content but also aesthetically pleasing: Elisa Macellari's illustrations enhance the graphic design and make it a pleasure to read and browse. Furthermore, the presence of the patronage of scientific societies testifies to the collaborative nature of this work, the fruit of a broad and shared collaboration. This result fills us with satisfaction and we truly feel it is a significant achievement."
The White Paper "is perfectly in line with what our association has been doing since its inception," remarks the Apacs president, "to inform, disseminate, and raise awareness. Indeed, we are talking about a disease with a very low prevalence—in Italy, it affects an estimated 1.000-1.100 people. This means that, unfortunately, it is still little known not only among the general population, but also in the medical and healthcare fields: often, not even general practitioners encounter it during their careers."
"It can happen," Torracca explains, "that a patient presents to the emergency room or a specialist and the disease goes unrecognized; or that a person with early symptoms, which could be indicative of vasculitis, is not promptly referred for further investigation. This leads to late diagnoses and, consequently, poorer prognoses than would be achieved with early recognition. This is why," Torracca adds, "we believe it is essential to talk about it: describing patients' problems, their experiences, their daily difficulties, helps raise awareness of the disease and raise awareness among those who come into contact with the book—be they doctors, citizens, or institutional representatives."
APACS's hope "concerns precisely this last aspect," the Association's president emphasizes. "The White Paper also included political voices committed to ensuring greater attention to the disease. Although EGPA already has an exemption code, it is not yet recognized for the purposes of civil disability, with all the employment, social, and economic implications that this entails for those affected. Our hope is that this project can help raise awareness, create the conditions for concrete discussions with institutions, and finally lead to official recognition of the disease in terms of civil disability and access to Law 104. Currently," Torracca concludes, "there is no specific disability code for EGPA: those who benefit from it do so based on their symptoms and the damage the disease has caused over time. This is a step we believe is necessary to ensure dignity, fairness, and rights for those who live with this rare disease every day."