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The Hellenic Cystic Fibrosis Association is the panhellenic association for cystic fibrosis, focusing on the protection of and care for patients suffering from Cystic Fibrosis; a serious genetic disease with a particularly low life expectancy which causes systemic respiratory infections gradually reducing respiratory capacity altogether. Through the Association’s actions, a number of developments have been achieved, such as the creation of specialised Cystic Fibrosis centres, the exchange of relevant know-how and the connection with hospital units abroad, access to innovative treatments, as well as the information and awareness of the public with the aim of ensuring prevention and providing support to both the patients and their families.
In April 2020, 30 critically ill patients joined the programme of early access to the “Trikafta” revolutionary treatment, in the context of which it is important to undergo regular spirometry in order to monitor and self-manage the disease. To this end, the John S. Latsis Public Benefit Foundation, with its participation in the “Breath Unlimited”, a multi-level campaign by the Association, has covered the cost for the supply of 48 personal spirometers –devices for monitoring and recording respiratory function– for the 30 patients who have started the treatment, as well as for other patients, members of the Association, giving priority to those facing the most serious respiratory problems. This donation was intended to provide patients with the ability to remotely monitor and self-manage the disease, as well as to protect them from frequent hospital visits amidst the pandemic.
“In Cystic Fibrosis, the first organ to be destroyed is our lung, which is why the spirometry examination in the hospital is part of the regular monitoring of our respiratory function. Nowadays, due to the coronavirus pandemic, patients’ visits to hospitals must be avoided at all costs, and the spirometry test can be remotely done at home. The donation of personal spirometers has provided us with a valuable apparatus for the self-management of our disease, especially for particularly impaired patients, while, at the same time, it has protected us from hospital visits during the critical period of the pandemic.”
Honorary President, Hellenic Cystic Fibrosis Association