Rome, 19 Nov. (Adnkronos Health) – In Italy it is estimated that just under 120 thousand people suffer from alopecia areata. For these patients there is now a White Paper and a Manifesto to raise awareness of the little-known pathology. The presentation was held today in the Senate: the event represented a crucial moment to raise awareness among public opinion, institutions and the scientific community on the physical, psychological and social impact of this autoimmune disease, which is still too often underestimated.
The project, created by FB&Associati and promoted by the Italian Association of Alopecia Patients and Friends Odv (Aipaf Odv) – reports a note – received the patronage of the most authoritative scientific societies in the sector, including the Association of Italian hospital dermatologists, venereologists and healthcare providers public (Adoi), the Italian Society of medical, surgical, aesthetic dermatology and sexually transmitted diseases (Sidemast), the Italian Society of trichology (SITri.), the Italian Society of pediatric dermatology (SIDerP) and the Italian Federation of general practitioners (Fimmg), and was created thanks to the non-conditioning contribution of Giuliani, Lilly, Pfizer, CRLab and Difa Cooper Cantabria. The meeting highlighted the active and central participation of all the actors involved in the project, together with institutional representatives and scientific experts.
Aipaf Odv, in close collaboration with the actors present, underlined the crucial value of a strong and structured synergy to transform patients’ needs into concrete and targeted actions. “Alopecia areata is not just an aesthetic issue, but a condition that profoundly affects the lives of those affected by it. For this reason – declares Claudia Cassia, president of Aipaf – it is essential that it is recognized at an institutional level as a disabling disease, for guarantee patients access to care, psychological support and services that help them live with peace of mind. As Aipaf Odv, we are working to create awareness and push for patients to receive the respect and support they deserve hair is not only a physical problem, but also an emotional and social one. As an association, we are committed to creating a support network that offers assistance, information and above all freedom of choice: if a person wants to wear a wig or show themselves without hair, they must to be able to do it without fear or prejudice. We want every patient to feel free to live their condition without shame, with the awareness of having a supportive community behind them.”
“In recent years, we have made significant progress in understanding the sophisticated immune mechanisms that cause alopecia areata – says Alfredo Rossi, associate professor at the Dermatology Clinic of the University of Rome La Sapienza, Policlinico Umberto I – Thanks to these discoveries, today we can use target drugs, aimed at selectively targeting the intimate mechanisms underlying this disease. These drugs, already successfully used in other autoimmune diseases such as rheumatoid arthritis, can also be used to treat. patients with alopecia areata. Our hope is that in the future therapies will become even more effective and personalized, allowing those suffering from this disease to significantly improve their quality of life.”
The White Paper on alopecia areata represents an “important step to raise awareness among both doctors and patients – underlines Michela Valeria Rita Starace, Dermatology Unit, Irccs University Hospital of Bologna, Policlinico S. Orsola-Malpighi, Department of Medical Science and surgery, Alma Mater Studiorum – University of Bologna – It is a tool that helps disseminate scientific and practical information, making the treatment path clearer and accessible. Furthermore, it is essential to promote the recognition of patients’ rights, because it sheds light on their difficulties and their real needs, strengthening their voice and the request for adequate assistance to this disease.”
The White Paper wanted to dedicate a particular focus to the role of the general practitioner, a fundamental figure for patients suffering from alopecia areata. “It is the first point of access to care for the majority of patients, even for conditions such as alopecia areata which has a strong emotional as well as physical impact – recalls Giuseppe Zagami, deputy national secretary of Fimmg, National Executive for Continuity of Care – The Our role is fundamental to identify the symptoms early, direct them to the specialist and provide ongoing support. To enhance the general practitioner in this process, it seems useful to promote specific training on the pathology and strengthen the connection with the dermatologists, creating an integrated care team that can best respond to patients’ needs”.
“It is not just a medical pathology, but a phenomenon with significant social, relational and economic implications. The direct costs for clinical management and indirect costs linked to loss of productivity, social isolation and psychological impact can be extremely significant – highlights Giovanni Ciofalo, associate professor in Sociology of cultural and communicative processes Department of Communication and Social Research of the Sapienza University of Rome – The White Paper presents itself as a precious tool for understanding not only the health burden, but also the weight that this disease exerts on the company in its own complex, inviting us to reflect on the need for more inclusive health policies and the adequate resources to address it”.
“Like many other autoimmune diseases, alopecia areata requires attention that goes beyond simple medical treatment, investing in prevention, early diagnosis and global support for patients. The Parliamentary Intergroup for the prevention and treatment of autoimmune diseases, which I had the honor of founding, was born precisely with the aim of giving voice to pathologies like this, which are too often ignored – underlines Senator Ignazio Zullo, member of the 10th Permanent Commission (Social Affairs, Health, Public Work and private, social security) of the Senate – The presentation of the White Paper on alopecia areata is an important step towards a more aware, multidisciplinary and inclusive approach, capable of responding to the real needs of those who experience the difficulties of these diseases every day”.
“Currently, Italian legislation provides various measures to support patients with chronic diseases, but for alopecia areata it is necessary to do more – says Augusta Montaruli, member of the 1st Commission (Constitutional Affairs, of the Presidency of the Council and Interior) of the Chamber – The institutions can intervene by promoting the recognition of the pathology in the context of chronic and disabling diseases, thus facilitating access to treatments and psychological support services. My commitment, and that of the 1st Commission, is to work to ensure that it is increased attention to these issues and to develop health policies that recognize and respond to the specific needs of those living with this disease”. The White Paper represents “an authoritative synthesis that finally brings a complex and often misunderstood pathology to the center of the scientific and social debate – concludes the Italian Society of Trichology – For us at SITri., this document is a manifesto that promotes knowledge, sensitivity and innovation Its implementation allows us to outline a clear path to improve diagnosis, access to treatment and support for patients, restoring this condition the dignity it deserves and offering concrete answers to the needs of those affected.”
