“Each breath, a step closer to our dreams, closer to our cure! This is the message we could have shouted smiling this year after years and decades of waiting. The reason for this cheering are the new innovative cures, which concentrate on the causes of the disease. However this doesn’t apply to everyone. On this year’s Worldwide Cystic Fibrosis Day, at the end of the second bike tour we had another initiative as a symbolic gesture. We set Maria, Vivian, Vagelio, Maria, Sotiris, Theodoti, Stamatis, Dimitris and Konstantinos free in the sky and let them breathe. These were the balloons with the names of our fellow patients, who passed away this year.”
This was the statement of Dimitris Kontopidis, president of the Hellenic Cystic Fibrosis Association at the Syntagma Square in the presence of the vice-mayor for Civil Society and Intramunicipal Decentralization of Athens, Amalia Zepou. The same event took simultaneously place at the White Tower of Thessaloniki.
Worldwide Cystic Fibrosis Day, September 8th 2015
“Each breath, a step closer to our dreams”
In addition to the information and awareness raising campaign on the Worldwide Cystic Fibrosis Day the Hellenic Cystic Fibrosis Association in collaboration with the Northern Greece Association of Parents and Guardians of CF Patients organized for the second time in two years a bike tour on Tuesday, September 8th 2015 in Athens and Thessaloniki. The participation of citizens of all ages was big and moving, while blue, the color of optimism, filled the center of both cities!
With the motto “Each breath, a step closer to our dreams”
we concentrated again this year on the awareness raising of the public about the most common hereditary disease of the white race. Cystic Fibrosis is a serious multisystemic disease, which affects many organs, mainly the lungs, and is still immedicable. Patients with CF usually decease due to respiratory insufficiency. The chances of a child, whose parents are both carriers of CF, being also born with CF is 1 to 4. We are here today in order to urge young couples to take the necessary prenatal test, since 500.000 carriers have been counted in Greece according to calculations. Due to this lack of information it is estimated that every week 1-2 children with CF are born. Meanwhile ca. 800 patients with CF live in Greece.
More about the disease here.
The vice-mayor for Civil Society and Intramunicipal Decentralization, Mrs. Amalia Zepou making her statement at the Syntagma Square in Athens.
Each breath, a step closer to our cure!
This is the message we could have shouted smiling this year after years and decades of waiting. The reason for this cheering are the new innovative cures, which concentrate on the causes of the disease. In the next few days we are expecting the authorization of another innovative medicine (ORKAMBI) in Europe, since it has been already authorized in the U.S.A. and concerns a great percentage of the patients. However it’s not just the ORKAMBI; combinations of innovative medicines, which will apply to the majority of the patients, are expected to be authorized in 2017, while gene therapy has already made big progress.
However the progress in our land didn’t stop there.
After many efforts the two medical centers in Athens (for adults in Sismanoglio hospital and for children in Ag. Sofia hospital), where the majority of the patients with CF are being monitored, began participating in the European disease registration carried out by the European Cystic Fibrosis Society. This initiative is a useful resource not only for the doctors, but also for the patients and has been enforced in Thessaloniki since 2007!
The continuous recruitment and training of staff in the adult unit of the Sismanoglio hospital, which is also supported by its liaison with the medical center in Southampton, will surely contribute to the improvement of the specialized medical care of patients with CF. Another step towards the survival of patients with CF is the accomplished liaison with the Division of Transplantation at the Vienna General Hospital (AKH).
Our “struggle” for life and for the qualitative improvement of the medical care will continue!
The reason for this struggle is the low survival rate in our country (ca. 30 years old), while in other European countries with access in the same medicines the survival rate exceeds the 43rd year of life! The main cause of this problem remains the lack of specialized medical centers, of specialists on CF, of information etc. We aim at the adaptation of the European standards, which also ought to be implemented by the medical centers specialized in CF in Greece, since the former Minister of Health didn’t proceed with their authorization by the related decision of the Greek Central Health Council. The case is remains open for the last 2 years (decision number 2 of the 241st plenary session/ 10.07.2013). The authorization of the CF units in the Ippokratios and Papanikolaou hospitals in Thessaloniki (decision number 2 of the 243rd plenary session/ 07.11.2013), the independent chambers in the Ag. Sofia hospital, the compensation of respirators, consumables and sessions of physiotherapy, which is a vital aspect of the therapeutic treatment, free access to innovative cures, clinical studies and the home care will remain as the priorities of our association. Moreover the awareness raising about the organ donations, a second chance in life, was and will be a common cause with other institutions.
The message we would like to send with the presence of all these bikes to our fellow patients is
a constant reminder that exercise is a central aspect of the cure. The first results of the individualized exercise programs, which have been carried out for the first time in our country too, in Athens and in Thessaloniki, are more than remarkable. Not only did they improve the respiratory function and the weight of the patients, but they also contributed to a more efficient function of the muscles as far as the consumption of oxygen is concerned, thus improving the quality of life of the patients participating in those programs! The exercise guaranteed therefore a better physical state and respiratory function with a view to the innovative cures that are now available.
Maria, Vivian, Vagelio, Maria, Sotiris, Theodoti, Stamatis, Dimitris and Konstantinos
were the balloons with the names of children with CF, who passed away this year, and that were set free in the sky to breathe. This was a symbolic gesture that has been established from this year on. Together with the friends and family of the deceased we came up with the idea to donate money to the association and to use balloons with the names of the deceased, instead of placing crowns. This way the struggle of our fellow patients is supported and can be continued.
Ο Αντιδήμαρχος Θεσσαλονίκης στην ταυτόχρονη εκδήλωση στον Λευκό Πύργο της Θεσσαλονίκης με την Πρόεδρο του Συλλόγου Β. Ελλάδος, Ρούλα Τζώνου.
