Today is World Pulmonary Hypertension Day, a rare disease that is not well-known and whose effects are often underestimated.
Pulmonary Hypertension is a rare blood vessel disease that affects the lungs. In Italy, there are about 3000 people affected by the disease, and they may endure symptoms such as tiredness, fatigue, fainting for up to two years before actually managing to diagnose and cure it.
Patients suffering from Pulmonary Hypertension have to face a series of complications, both in their private lives and medically. And, this year, the pandemic has further complicated the issues for rare disease patients, both physically and psychologically. What are the consequences of Covid-19 on patients? Can we improve the safeguard of fragile people during a pandemic? How can we overcome prejudice and diffidence against these diseases? What role can schools play?
Today, 600 students will discuss this and other issues as part of the final appointment of “Growing Up during the Emergency” for Project Factor J. After events in Sicily, Lombardy, Piedmont, Lazio and Veneto, the educational marathon was also held in Emilia Romagna. The project is promoted by the Fondazione Mondo Digitale in collaboration with Janssen Italia and the patronage of the Higher Institute for Health to educate young men and women to develop their emotional intelligence, respect uniqueness and diversity, and consider disease as an element of life.
Two students from the Liceo Enrico Fermi in Bologna, Laura e Aurora, posed questions to Specialist specialista Nazzareno Galiè, Director of Cardiology at the Sant'Orsola General Hospital in Bologna. Another exceptional guest was Olympic ice-skating champion Carolina Kostner, who also was a testimonial for the “A Breath of Life” Campaign promoted by Janssen Italia in collaboration with the Italian Pulmonary Hypertension Association (AIPI).
“Pulmonary hypertension is not widely known about, especially by the young. The fact that is presents no specific symptoms often leads it to be underestimated and overlook its symptoms,” explains Nazzareno Galiè, Director of Cardiology at the Sant'Orsola General Hospital in Bologna, Coordinator of the International Guidelines on Pulmonary Hypertension, and Director of the AIPI Scientific Committee. “In order to manage the disease correctly and improve its prognosis, early diagnoses are fundamental. This is why we need to raise awareness on this disease and we welcome initiatives such as todays with young students. Youth are like sponges and it’s vital to increase the understanding and respect of those who will be tomorrow’s adults.”
“Factor J introduces emotional education to schools. We immediately believed in this beautiful project and are proud to participate in it,” declares Leonardo Radicchi, President of AIPI. “The integration of life skills into traditional school curricula, including empathy, listening and respect have allowed the hundreds of participating students to grow … and this is mirrored by the many questions they asked during webinars. The students proved to be interested in the emotional aspects that emerge when facing a disease, but also, to my surprise, about the technical aspects of diseases, especially pulmonary hypertension. If we want to use a word play, we could say that during these months of distance learning, Factor J has proven to be a true breath of life.”
“I am very happy that I had the opportunity to participate in this event,” explains Carolina Kostner. “It was beautiful to interact with so many young men and women and focus on rare diseases such as pulmonary hypertension. Taking care of ourselves also includes information and prevention.”
Factor J was conceived for youth. It aims to help them develop greater awareness about difficult issues and behave responsibly and respectfully. In this way, we can also improve their attention to their health and avoid late diagnoses.
Fattore J è un progetto pensato per i giovani, e ha l’obiettivo di aiutarli nello sviluppare maggiore consapevolezza sulle situazioni di disagio, assumendo comportamenti responsabili e rispettosi. In questo modo è possibile anche migliorare il livello di attenzione sulla salute degli adolescenti ed evitare che le diagnosi arrivino troppo tardi.
Started in April 2020, Factor J involved 12,000 students from 63 schools in over 80 webinars dedicated to a range of therapeutic areas: haematology, immunology, infectious diseases, pulmonary hypertension and neurosciences. Besides the scientific partnership with the Rome Campus Bio-Medico University, the project collaborated with 8 national patient associations: Associazione Italiana contro Leucemie, Linfomi e Mieloma (AIL), Associazione Ipertensione Polmonare Italiana Onlus (AIPI), Associazione Malati Reumatici del Piemonte (AMaR), Associazione Nazionale per le Malattie Infiammatorie Croniche dell'Intestino (AMICI Onlus), Associazione Nazionale Amici per la Pelle (ANAP Onlus), Associazione Psoriasici Italiani Amici della Fondazione Corazza (APIAFCO), Network Persone Sieropositive (NPS Italia Onlus) and Progetto Itaca Onlus.
“We are very proud to have believed in a project that finally integrates life skills such as empathy, listening and respect into traditional school curricula,” points out Mirta Michilli, Director General of the Fondazione Mondo Digitale. Listening to patients and authentic testimonials has improved not only the students’ understanding of diseases and awareness of their health but has also contributed to creating spaces for dialogue for the acceptance and understanding of each other.”
“Janssen Italia is committed to drawing attention to rare diseases such as pulmonary hypertension and raising the awareness of youth and public opinion on this pathology that requires early diagnosis. As a company, we are at the forefront of innovative therapeutic research to improve the life quality and expectations of patients and make pulmonary hypertension a more manageable condition,” declares Loredana Bergamini, Medical Director, Janssen Italia.
