“To achieve the possible, you have to try the impossible!!!”
To achieve the possible, you have to try the impossible, was the message of Alexandra Kramatz, a Cystic Fibrosis patient from Germany to her fellow patients in Greece who achieved the impossible: to raise her respiratory function from 30% fev1 to 96,4% fev1 within 5 years by following a specialized and personalized exercise program, with simultaneous physiotherapy and medication. The commitment of the Hellenic Cystic Fibrosis Association is to implement similar programs in both Thessaloniki and Athens, where their launch was announced at the conference.
The Hellenic Cystic Fibrosis Association held a 3-day conference for the first time in Greece, which took place in Athens and Thessaloniki on 8-10 May 2015, of national and European scope, with the participation of physicians and health scientists from both the Cystic Fibrosis Centres of Greece and the Royal Brompton Hospital UK and Southampton Hospital UK.
8 & 9 May: Thessaloniki, Metaxas Amphitheatre, Pediatrics Building, Hippocrates General Hospital of Thessaloniki
10 May: Athens, Amphitheatre of the Hawremios Research Centre, Agia Sophia Children’s Hospital
More than 200 health professionals and students along with dozens of patients and parents participated in the 3-day Conference “Physiotherapy & Exercise in Cystic Fibrosis” organized by the Hellenic Cystic Fibrosis Association “Hellenic Society for Cystic Fibrosis” in collaboration with the Parents & Guardians Association of B. Greece of Children Suffering from Fibrous Cystic Fibrosis under the auspices of the Panhellenic Medical Association.
This is the first time in Greece that a national and European scale conference on Cystic Fibrosis was attempted, which took place on May 8 and 9 at the “Hippocrates” hospital in Thessaloniki and was concluded on May 10 at the “Agia Sophia Children’s Hospital” in Athens. The Conference with such a wide variety of topics managed to combine the participation of departments-units, doctors and health scientists of adults and children with Cystic Fibrosis from all over Greece at the same time with the participation of specialized teams of doctors and health scientists from 2 of the largest cystic fibrosis centers in England. These centres see around 300 children at the Royal Brompton Hospital and around 200 adults at Southampton Hospital.
Auditorium of the Hawremios Research Centre, Aghia Sophia Children’s Hospital
With the special contribution and cooperation of the 3rd Department of Pediatrics of the Aristotle University of Thessaloniki, the specialized treatment and exercise program for patients with cystic fibrosis was presented, which is a pioneer for the Greek standards and at the same time the new trend in Europe. The presentation was opened by Mr. Deligiannis, Professor of Sports Medicine, from the Faculty of Sports Medicine of the Aristotle University of Thessaloniki, explaining why exercise is a medicine and a way of life for patients with cystic fibrosis. He presented examples of cystic fibrosis patients who did not let the disease keep them away from their lives such as the famous triathlete Lisa Bentley, the famous bodybuilding athlete James Boudreau and others.
Then Mrs. D. Mameletzi Assistant Professor stressing the importance of exercise and sport for patients underlined that “the level of participation in sporting activity is an indicator of the prognosis of cystic fibrosis in the long term” and the conditions of effective exercise for patients with cystic fibrosis. Then the baton was passed to Mr. A. Kambouras, Medical Doctor, Scientific Associate of the Aristotle University of Thessaloniki, who explained the cardio-respiratory function in patients with cystic fibrosis and the mechanisms by which patients benefit from exercise and especially from the fatigue test performed in the Aristotle University of Thessaloniki laboratory. This procedure has been found to result in 16.4% fewer intravenous injections leading to savings for the health care system. The specialised programme for patients with cystic fibrosis that will be launched and its details were announced by Mr. S. Giannakoulakos, Physiotherapist – Scientific Associate of TEFAA – AUTH. During the program, the strength of the child/patient with cystic fibrosis will be measured, as well as the flexibility and balance that will give us an insight into the ability to perform basic daily activities.
Dimitris Kontopidis – Alexandra Kramatz
Particularly important were the presentations of patients with Cystic Fibrosis during which the president of the Hellenic Cystic Fibrosis Association presented the new innovative platform of Cystic Fibrosis Greece, which will be a model guide for other chronic diseases, while the audience was thrilled with the testimony of Alexandra Kramatz, a patient with cystic fibrosis who follows a specialized exercise program and has seen dramatic results in her health condition.
More specifically, the representative of the German Cystic Fibrosis Association told us about her experience and how she was able to improve her lung function by 65% through sports activities, physiotherapy and medication in just 5 years. Alexandra shared with her Greek co-patients her successful program during which she dramatically improved her health. She suggests them to include exercise in their daily routine and convince their family to always exercise with the help of qualified health professionals.
Marry Carroll, specialist in C.F. Pulmonologist from Southampton Hospital-UK
Mark Rosenthal, Paediatric Pulmonologist from the Royal Brompton Hospital-UK
Speeches and presentations on new developments, and the equally important role of other Cystic Fibrosis related specialties (physiotherapists, dieticians, nurses) were developed by the teams from the UK specialist Cystic Fibrosis, Children’s specialist centres led by Mr. Mark Rosenthal, a paediatric pulmonologist, from the Royal Brompton Hospital and adults with Mrs Marry Carroll, a specialist C.F. pulmonologist from Southampton Hospital. The importance of dietary intervention in the disease and the role of the specialist nurse in the disease management team who is the bridge-connection between the hospital’s cystic fibrosis unit and the patient and their family.
Nicola Collins – Nicky Murray, Physiotherapists at the Royal Brompton Hospital
Perhaps the most important part of the conference was the workshops that took place simultaneously with the conference during which patients and parents had the opportunity to participate in a comprehensive individual counselling session where Greek doctors, physiotherapists, dieticians and nurses shared their experience and expertise with their colleagues.
The consultation session was complemented by the demonstration of physiotherapy methods in the C.F., videos with real physiotherapy conditions, musculoskeletal strengthening issues, ways of clearing the airways, etc. while the audience had the opportunity to watch a live demonstration of respiratory exercises on adult and child volunteer patients.
Throughout the conference the audience had the opportunity to ask questions inviting the speakers to further elaborate on the above mentioned topics.
Demonstration of Physiotherapy methods in Cystic Fibrosis
Nicola Collins – Nicky Murray, Physiotherapists at the Royal Brompton Hospital
Demonstration of Physiotherapy methods in Cystic Fibrosis
Collins Nicola – Murray Nicky, Physiotherapists, Royal Brompton Hospital
Demonstration of Physiotherapy methods in Cystic Fibrosis
Collins Nicola – Murray Nicky, Physiotherapists, Royal Brompton Hospital
Alongside workshop – individual counselling session
Group of Mr. Marry Carrol – Southampton Hospital – Group of Mr. Friendship Diamantea – Sismanoglio
Adult Cystic Fibrosis Units
Asterios Kampouras, Doctor, Scientific Associate of the Aristotle University of Thessaloniki
Stavros Giannakoulakos, Physiotherapist, Scientific Associate of the University of Thessaloniki – AUTH
Valuable was the contribution of our volunteers and the members of the Hellenic Association and the N. Greece Cystic Fibrosis Association
We would like to thank our photographers Lefteris Hraptakis and Nadia Theocharopoulou.
