The war in Ukraine it does not spare the hospitals, it makes it difficult to supply drugs and oxygen, it blocks therapies. Patients are in trouble andRare Diseases Observatory (Omar) since the first days of the conflict he has maintained relations with local associations: it is in this constant exchange of information that the meeting with Juliaa 26-year-old girl who until a few days ago lived in Kiev, and tells what it means to live with a rare, chronic and progressive disease, thepulmonary arterial hypertension, under the bombing, forced to take refuge in the basement for days. The story of Yuliya, however, is also a story of solidarity, of a network that is activated to respond to a need. In fact, the girl tells the journalist about Omar, Ilaria Vacca, that after the outbreak of the conflict in Kiev the hospital was no longer able to provide her with medicines and assistance. From this first contact until his arrival at the Monaldi hospital in Naples.
“I try to leave, I want to cross the border, I only have some addresses, I would like to see Italy”, Yuliya wrote to Omar’s reporter. Hence the decision to travel alone, with little luggage, a couple of addresses, those of the Italian reference centers for the pathology given by the Ukrainian association. Omar’s journalist promptly involved the Italian associations of reference, Aipi E Amip, and the solidarity chain started. Now Yuliya is in Naples, she is well and was promptly taken care of by the Center for the diagnosis and treatment of pulmonary hypertension of the Monaldi hospital in Naples. To welcome her on arrival she found the volunteers of Amip, a non-profit Pulmonary Hypertension Patient Association and a person ready to host Yuliya at home if necessary.
Pulmonary arterial hypertension – remembers Omar in a note – it is a complex condition characterized by dangerously high blood pressure and vascular resistance that causes progressive fatigue for the right ventricle which can culminate in even fatal heart failure.
Upon arrival of the girl, Michele D’Alto, head of the Center for the diagnosis and treatment of pulmonary hypertension at the Monaldi hospital in Naples, and Giuseppe Limongelli, head of the Rare Diseases Coordination Center, Campania Region, are immediately notified. Everyone is ready to welcome this young woman who barely speaks a little English, but who hasn’t let herself be overcome by her fear.
“We are really happy to have given our contribution to welcome Yuliya to Italy – he affirms with great emotion Laura Gagliardinipresident of Amip Onlus – and to be an active part of a solidarity network that will most likely welcome other patients with pulmonary arterial hypertension in Italy. In Naples, one of our delegates welcomed Yuliya upon her arrival, she accompanied her to a reception facility coordinated by the Ukrainian consulate which issued all the necessary documents to be taken in charge from a medical and health point of view. He has helped her settle down, has provided for her most urgent needs, and is always there for her. This for us is the sense of making associations and networking ”.
Less than 48 hours after her arrival, the girl was taken over by Michele D’Alto in person. “Yuliya is quite well, we have performed all the necessary checks and we have reshaped her therapy according to current needs – declares D’Alto who follows about 350 patients with pulmonary arterial hypertension in his Center – We are really happy to have accepted her, because this it is the profound meaning of our work as doctors. We are absolutely available in case there is a need to assist other patients from Ukraine. Our center, which has a multidisciplinary team including cardiologists, pulmonologists, radiologists and rheumatologists – goes on – fa parte della Ern-Lung European reference network on rare respiratory diseases (the European network dedicated to rare pulmonary diseases), we are therefore in contact with all the other European centers and this allows us to take action even in the case of reports from other centers. We have always worked in synergy with the Amip association and we are truly convinced that only by networking we can offer patients the best standard of care “.
“The Rare Diseases Coordination Center of the Campania Region is ready to give support to emergency situations like these – he claims Limongelli – and to promptly take action for all situations of need that may arise. With the regional management and the general and strategic management of the Monaldi hospital (Azienda dei Colli), we are proud of our doctors and our health staff, who work every day with great competence and the same heart, for all people who need to treatment. We are also proud to be part of this network, together with the Rare Diseases Observatory, which allows us to get in touch in real time with patient associations, which do extraordinary work every day “.
“The Campania Region and the regional pharmaceutical service have found themselves, in the last two years, facing an absolute emergency such as that of the Sars-CoV2 pandemic, which required the constant commitment of all the health professionals involved – he says Ugo Trama, Head of the Drug and Device Policy Uod -. Emergency in an emergency. Today we took action immediately to make a contribution to the management of refugees, including through healthcare and pharmaceutical assistance. In such complex moments as a pandemic or a war, fragile patients such as rare or chronic patients are those who most need our attention.. In the case in question, the regional pharmaceutical assistance has arranged for Ylenia to be provided with the necessary drugs for the entire time of her stay and beyond “.
“We are happy for this girl, even if saddened for all the people who are still waiting to be able to cross the borders – comments Ilaria Ciancaleoni Bartolidirector of the Observatory for rare diseases -. We will continue to keep in touch with Ukrainian associations, thanks also to the over 260 associations of the Rare Diseases Alliance, and whenever possible we will try to be of help.to be a link to make information and contacts travel quickly: it is our way of doing service journalism and of giving a concrete hand “.