VENICE (ITALPRESS) – Francesca’s story, a job interview and many memories related to her grandfather, these are the elements for a new narrative of hereditary angioedema, which, when diagnosed comes to disrupt the lives of those affected and those around them, but is less scary today than in the past.Francesca and her grandfather both live with hereditary angioedema, but their experience with the disease and its impact on their lives is tied to two different historical moments, her grandfather’s past and Francesca’s present, who thanks to advances made by science is now freer to choose and follow her dreams. The experience of illness is told as a personal journey, a journey of the protagonist, in a moment of everyday life, in which everyone will be able to find deep connections and fragments of themselves. “The Colloquy” is a short film that aims to spread awareness and confidence in the future for those with hereditary angioedema and their caregivers. The short film – produced by BioCryst, a global biotechnology company, founded in 1986, with more than 30 years of experience in drug discovery, development and commercialization, conceived and produced by Save the Cut, directed by Federico Caponera and Giovanni Boscolo Marchi, under the Patronage of A.A.E.E. (Voluntary Association for Hereditary Angioedema and Other Rare Forms of Angioedema) and ITACA (Italian Network for Hereditary and Acquired Angioedema) – was presented today at Son of a Pitch Award 2024, during the 81st Venice International Film Festival. HAE is a rare life-threatening disease caused by a genetic deficiency of a protein called C1 esterase inhibitor (C1-INH). C1-INH plays an important role in preventing the bradykinin-forming system from becoming overactive and mediating swelling in HAE. Hereditary angioedema is a rare condition, affecting about 1 in every 50,000 people. In Italy, an estimated 1,200 people are currently living with HAE. Symptoms usually appear in childhood or adolescence in the form of edema (swelling). If untreated, HAE patients often have multiple attacks each month, and the swelling caused by each attack can last 2 to 4 days. Swelling may affect the skin, face, genitals, wall of the gastrointestinal tract and glottis. Skin edema may cause temporary inability to perform normal activities, may be disfiguring and cause pain. 3 “Raising awareness, informing and promoting the progress of research in the field of angioedema are among the main goals of the ITACA network,” explains Professor Mauro Cancian, president of the Italian Network for Hereditary and Acquired Angioedema (ITACA), an organization that brings together the 25 Italian reference centers, as well as director of the Operative Unit of Allergology of the Hospital-University of Padua. If in rare diseases early diagnosis is always fundamental, in the case of hereditary angioedema this becomes even more important because, in addition to the physical damage, the unpredictability of the disease determines a heavy emotional burden in the patient. Fortunately, today we have good medications available for ongoing prophylaxis, which allows for constant prevention of angioedema attacks in patients. The possibility of using prophylaxis with oral medications-which are the latest therapeutic innovation-then allows us to meet the needs of an increasing number of HAE patients in a practical, painless and autonomous way, improving their quality of life. The story that the short film delicately but timely tells is a concrete example of this.” The sense of vulnerability and helplessness generated by hereditary angioedema, the diagnosis that sometimes comes more than 8 to 10 years after the first symptoms, and the impact on quality of life are difficult for those who do not have it to understand. It is a disease that ‘pauses’ the future, triggering anxiety and uncertainty in the lives of patients and their families because of the unpredictability of the disease itself and the fear of “the next attack.” “The Interview” tells a story of everyday life: Francesca, the protagonist, has to face a job interview and in answering some questions she thinks back to the most precious moments she spent together with her grandfather Roberto, who also suffered from hereditary angioedema. Through the memories and lessons of the past, Francesca finds the strength to decide on her future. A dialogue between two, Francesca with her grandfather, a succession of metaphors, and a delicate, evocative and empathetic language are the elements that characterize the short film and allow it to instill in the audience a positive and hopeful message. Through the narrative, one perceives how the memory of her grandfather will give Francesca the strength to face her fears and find the courage to change course and “sail” toward new goals made attainable today thanks to advances in scientific research.”Hereditary angioedema is a sneaky disease, attacks can occur at any time and can affect any district of the body, without giving warning, except in rare cases – says Pietro Mantovano – President from the AAEE (Voluntary Association for Hereditary Angioedema and Other Rare Forms of Angioedema), speaking on behalf of HAE patients -. Disclosure is essential to improve diagnosis; our Association has always been committed to increasing knowledge and awareness about this rare condition. Reducing the time to diagnosis and ensuring adequate access to the latest therapies for all patients are our priorities. We are convinced that initiatives such as these keep attention on the disease high and are a concrete help to people with hereditary angioedema.” Thus, the short film aims to raise awareness and understanding of the fears and anxieties that patients have to live with every day, but it also wants to be a message of hope and confidence because research has made great strides that allow patients to live fully, make plans and accept new challenges that were unthinkable until recently. It is a message of confidence meant to raise everyone’s awareness of a condition that profoundly affects those affected, in body and psyche.”We are proud to have collaborated with Save the Cut in the production of “Il Colloquio,” a short film that highlights how progress in research allows patients to better cope with daily life and look to the future with greater confidence,” said Simone Tiburzi, VP and General Manager of BioCryst Italia. “Having supported the development of this short film, increasing attention on hereditary angioedema has an important value for us. We are confident that Francesca’s story can be the story of many people living with angioedema. With “Il Colloquio” we want to speak in a new tone about the disease and we hope to foster a profound exchange between those who live with the condition, family members and those who do not, because our commitment goes beyond the search for innovative therapeutic solutions,” Tiburzi concluded. To see the trailer for “Il Colloquio”: https://www.genhae.it/Con the presentation during the 81st Venice International Film Festival as part of the Son of a Pitch Award opens the distribution of the short film. “The Colloquy” will be proposed for selection at other major film festivals.
– photo xa7/Italpress -(ITALPRESS).
