‘’Οι ασθενείς με Κυστική Ίνωση μεγαλώσαμε περιμένοντας την οριστική θεραπεία και πράγματι βρισκόμαστε στην εποχή των καινοτόμων φαρμάκων. Ωστόσο, υπάρχουν 3 βασικές θεραπείες που θα μας κρατήσουν στην καλύτερη δυνατή κατάσταση, για τηνστιγμή που θα έρθουν τα φάρμακα: η φυσιοθεραπεία, η άσκηση και η διατροφή. Έχουμε, λοιπόν, καθιερώσει αυτό το συνέδριο, με σκοπό να αναδείξουμε την σημασία τους.Φέτος, πραγματοποιήθηκε με επιτυχία για μια ακόμη φορά με περισσότερους από 350 ασθενείς, γονείς και φοιτητές. Συμμετείχαν ομιλητές από τα εξειδικευμένα κέντρα Κ.Ι. της Γερμανίας, του Southampton UK, με την υποστήριξη από όλα τα κέντρα Κ.Ι. της Ελλάδος, αλλά και φορείς όπως τα ΤΕΙ Φυσιοθεραπείας, τα ΤΕΦΑΑ, διεκδικώντας με την κάθε μας ανάσα, να γίνει ένα βήμα πιο κοντά στα όνειρά μας.”
“Physiotherapy and Exercise in Cystic Fibrosis”
21 May Thessaloniki – 22 May Athens
The speakers and volunteers of the 3rd Conference “Physiotherapy and Execise in Cystic Fibrosis
“Us patients with Cystic Fibrosis, we grew up waiting for the cure and, indeed, we are in the era of innovative medicine. However, there are three main treatments that will keep us in the best condition possible until the time comes that medicines will be needed: physiotherapy, exercise and diet. So, we have established this conference, in order to highlight their importance. It takes place every spring, with lectures by internationally renowned scientists, with workshops and interactive discussions with our partner physicians. We are determined to continue to expand the life expectancy and quality of our patients. Moreover, we want to point out the multi system nature of the disease and the effectiveness of focusing on the patient compliance. Because of the constant cooperation of health institutes with the scientific community from Greece and abroad and because we always focus on the patient with Cystic Fibrosis, we believe this can become a reality.
This year the conference was successfully held once again, with more than 250 patients, parents and students participating. Our speakers came not only from specialized C.F. centers of Germany, Southampton (UK) and Greece, but also from the Technological Educational Institute (Department of Physiotherapy) and the University of Athens (Faculty of Physical Education and Sport Science) claiming every breath to be a step closer to our dreams.”
Dimitris Kontopidis, President of the Hellenic Cystic Fibrosis Association (H.C.F.A.)
The Hellenic Cystic Fibrosis Association (H.C.F.A.) “Greek Society for Cystic Fibrosis” in cooperation with the “Association of Parents and Guardians of Children suffering from Cystic Fibrosis of Northern Greece” organized, for the third consecutive year, the Conference “Physiotherapy and Exercise in Cystic Fibrosis”. The conference was attended by scientists specialized in Cystic Fibrosis, from centers from Greece and abroad (Southampton Hospital – England, the Children’s Hospital -University of Wurzburg, Germany). Moreover, clinics and departments that monitor adults and children with Cystic Fibrosis in Athens and Thessaloniki participated in the conference.
The conference ”Physiotherapy and Exercise in Cystic Fibrosis” is now a tradition. It is an information platform for the importance of physiotherapy and exercise in the field of cystic fibrosis, as highlighted every year by reputable health care scientists all over Europe. It is a point of reference for doctors, physiotherapists, students and patients, to be educated and motivated.
1st session – Cystic Fibrosis in 2016
In the first session of the conference, doctors from the adult and children centers, from Thessaloniki and Athens, described the current situation in our country. The coordinator was Mr Tsanakas. Updates concerning innovative treatments and their correlation with different mutations were analyzed by Ms. Loukou (St. Sofia Hospital), the subject of nutrition and other gastrointestinal subjects were covered by Ms Fotoulaki (Papageorgiou Hospital) and the situation concerning transplantations was developed by Mr Kioumis (Papanikolaou Hospital). The head of the scientific committee for the European registry for Greece, Ms Hatziagorou (Hippokrateio Hospital), together with Mr Kotsifas (Sismanogleio Hospital) compared the situation of Greek patients with that of the rest of the European countries and underlined the many benefits of the registry, such as the participation in clinical trials and the online personal file of each patient. Mr Igglezos (Sismanogleio) pointed out the need for patient compliance and the need for inclusion of physical therapy and exercise on a daily basis. Ms Manika (Papanikolaou Hospital) participated in the
2nd section – Respiratory Physiotherapy
In the second session we continued with speeches and workshops demonstrating modern physiotherapy techniques and the use of assistive devices for patients with Cystic Fibrosis of different ages. The team of Mrs. Christara from TEI of Thessaloniki (Department of Physiotherapy) and the physiotherapists Ms. Papadopoulou, Ms. Chasalevri and Ms. Zeli from the adult unit of CF of Sismanogleio displayed technics of high excellence in respiratory physiotherapy.
Ms. Papadopoulou, Ms. Hatzialevri and Ms. Zeliou, physiotherapists from the adult unit of CF in Sismanogleio explain and demonstrate technics of respiratory physiotherapy in patients with CF.
3rd session – personalized exercise
For the third session we had the honor to have Mr. Hebestreit, professor of Pediatrics at Children’s Hospital, University of Würzburg (Germany) as our guest. It was he who first began the exercise programs decades ago. He emphasized on the significance of starting such programs and an early age, with sports that the child would enjoy the most and he insisted on urging the parents to participate in the program as well, together with their child.
Mr. Kampouras (Doctor, Research Fellow at AUTH) and Mr. Giannakoulakos (Physiotherapist, Research Fellow at AUTH) presented the early results of exercise programs that started in 2015 for children for the first time in Greece. Moreover, Mr. Anastasopoulos (Exercise Physiotherapist – MSc candidate) and Mr Vogiatzis (Associate Professor at UoA – Faculty of Physical Education and Sport Science, ‘Sotiria’ Regional Chest Diseases Hospital) presented the programs for adults that began with the introduction of intermittent exercise because of the impaired condition of patients.
To maximize the positive effects, the Hellenic Cystic Fibrosis Association supports this program by providing respiratory physiotherapy with amazing results. Ms. Zeli, an experienced physiotherapist together with her physiotherapist trainee Ms. Karapatoucha presented the results outlining the effectiveness in patient education.
“My personal goal is that when I leave this room all the conference participants will have understood the value of exercise and physiotherapy, not only in Cystic Fibrosis, but generally as a way of living”. -Helge Hebestreit (Professor of Pediatrics, Children’s Hospital, University of Würzburg, Germany)
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Mr. Kampouras (Doctor, Research Fellow at AUTH) and Mr. Giannakoulakos (Physiotherapist, Research Fellow at AUTH)
presented the early results of exercise programs that started in 2015 for children for the first time in Greece
Presenting the exercise program for adults
Mr. Anastasopoulos (Exercise Physiotherapist – MSc candidate) and Mr Vogiatzis (Associate Professor at UoA – Faculty of Physical Education and Sport Science, ‘Sotiria’ Regional Chest Diseases Hospital)
4th session – Patient experience – the innovative Breath Box
This year we had the pleasure to highlight the improvement of a Greek patient after the implementation if the personalized exercise and diet program. Alexandros Koukoulakis showed us how he increased his respiratory function, his muscle mass and how rapidly he reduced the gastrointestinal problems and infections, all through a personalized and strictly disciplined program.
”At first they begged me to begin. For the first five months whether I exercised or not, it didn’t matter to me. I actually didn’t want to. Same thing goes for the treatments. Now, I am in a much better shape and I have a physical condition better than an athlete’s!” – A. Koukoulakis
The President of the Hellenic Cystic Fibrosis Association, Dimitris Kontopidis presented a new venture. Having found huge improvements with the intermittent exercise program himself, he has begun the construction of an innovative breathing chamber, in cooperation with the scientific community of Cystic Fibrosis. He intends to create a network of specialized benefits with physiotherapy, exercise and nutrition as its three main pillars. The ultimate goal is the creation of the first rehabilitation center in Greece for Cystic Fibrosis.
5th session – a multi system disease – Interconnection with Southampton
In the fifth session Mary Carroll, the Head pulmonologist of the adult unit highlighted the outstanding results from the interconnection of Sismanogleio with Southampton (UK). As she said, it all started with two patients, Dimitris and Giannis: In a CF Europe conference they were informed about “Child Health International”, a charitable organization in England that funds interconnection programs. They then visited Ms. Valia Kechagia and Ms. Carroll in Southampton and decided to start a collaboration to apply for an interconnection project between Greece and Southampton. When Ms. Kechagia “left”, Ms. Carroll had to complete the program, and so he did. Now she has visited Greece many times, she and her team, they have educated five physiotherapists and nurses from Sismanoglio in Southampton. Ms Diamandea, a pulmonologist, has already completed 3 months of training and Ms Manika (Papanikolaou Hospital) is already scheduled to visit Southampton this September, thus managing to maximize the benefits for Greece.
The proper treatment of a multi system disease needs the involvement of many disciplines. Ms Carroll underlined the importance of proper nutrition, which is also our goal for 2017, and that of an effective treatment of any gastrointestinal problems.
Salib Rami, Professor of Otorhinolaryngology, also from Southampton, focused on the problems in the upper respiratory system and the need for frequent cleaning of the sinuses, as most infections start from there and continue to lower respiratory tract. 20% of patients in Southampton have undergone surgery and cleaning is a prerequisite for any transplantation
“Maybe the next step in CF is finding out what makes patients conform!”
