The President of the European Cystic Fibrosis Association (CF Europe), Ms. Jacquelien Noordhoek coordinated the Conference “Physiotherapy and Exercise in Cystic Fibrosis”, along with the President of the Hellenic Cystic Fibrosis Association, Mr. Dimitris Kontopidis, with the participation of international and Greek healthcare professionals, while the spotlight was focused on the innovative breathing chambre, “Breath Box”.

The “Physiotherapy and Exercise in Cystic Fibrosis” Conference in the Technopolis of the Municipality of Athens.

 18/09/2017

The President of CF Europe in Greeceand the Innovative “Breath Box”

The President of the European Cystic Fibrosis Association (CF Europe), Ms. Jacquelien Noordhoek coordinated the Conference “Physiotherapy and Exercise in Cystic Fibrosis”, along with the President of the Hellenic Cystic Fibrosis Association, Mr. Dimitris Kontopidis, with the participation of international and Greek healthcare professionals, while the spotlight was focused on the innovative breathing chambre, “Breath Box”.

The Hellenic Cystic Fibrosis Association, with the support of the European Cystic Fibrosis Association (CF Europe), successfully organised the “Physiotherapy and Exercise” Conference, with the participation of world-renowned experts, on Saturday the 16th of September 2017, in the Technopolis of the Municipality of Athens.

The Conference was coordinated by the President of CF Europe, Ms. Jacquelien Noordhoek, the President of the Hellenic Cystic Fibrosis Association, Mr. Dimitris Kontopidis, the Head of the Cystic Fibrosis Unit in Southampton, Ms. Mary Carroll, while each individual segment featured doctors from Greek Cystic Fibrosis Units as coordinators.

During the salutations, Mr. Stavros Doudounakis, representative of the Ministry of Health, spoke on behalf the Minister of Health, stating his continuous support of the Hellenic Cystic Fibrosis Association’s actions on improving the quality of healthcare services patients receive.

Ms. Jacquelien Noordhoek, President of the European Cystic Fibrosis Association.

During the introductory segment, Ms. Jacquelien Noordhoek presented the latest news regarding Cystic Fibrosis at the European level, as well as the challenges that patients from various countries face, and of course, the European Association’s plans for the following years. Mr. Dimitris Kontopidis presented the situation in Greece, focusing on the goals that the Hellenic Cystic Fibrosis Association has achieved, eliminating issues that had persisted for decades, in merely 5 years of activity. The vision that the association keeps pursuing is to have Greek patients participate in Clinical Studies and gain access to innovative medicines, as well as the improve their respiratory function, by introducing exercise and physiotherapy in their daily lives.

Similarly, Mr. Mark Allenby, Counselor at the Southampton Unit, explained the mechanics behind the next-generation medicines that are being developed for Cystic Fibrosis patients, which will target a much broader series of mutations.

Ms. Mary Carroll mentioned the substantial benefits from the interconnection between the Southampton and “Sismanoglio” Cystic Fibrosis Units, which is currently being implemented, and under her coordination, which was initiated by two patients and the Greek doctor Valia Kehagia, and is funded by Child Health International. Ms. Noordhoek was impressed by the collaboration and noted that it can act as a basis for other countries, on account of the meeting that took place in a related CF Europe conference.

To wrap-up the segment, Ms. Aoife Lynam, Dietitian from the Southampton Unit mentioned the methods that are used to monitor the patients’ nutrition, as well as the benefits that arise from receiving various nutrients for patients with Cystic Fibrosis.

Head of the Southampton Cystic Fibrosis Unit, Ms. Mary Carroll.

During the main segment of the conference, healthcare professionals from 3 Cystic Fibrosis Centres (Southampton, Liege, Gent) and 2 Respiratory Rehabilitation Centres (Zeepreventorium, Portsmouth) delivered presentations that included techniques and methods of exercise and physiotherapy, and interacted with the participants to further develop the healthcare network for patients with Cystic Fibrosis in our country, as well as to establish collaborations that will benefits patients all over Europe.

Mr. Filip Pyl demonstrating the physiotherapy techniques used in Gent, while interacting with healthcare professionals from the other units.

Ms. Elizabeth Shepherd, physiotherapist in the Southampton Cystic Fibrosis Unit, presented the respiratory physiotherapy methods used in the United Kingdom, emphasising the methods and devices used to clear the airways for patients, as well as the individualisation of physiotherapy frequency, depending on the patients’ health status.

Mr. Stavros Giannakoulakos, physiotherapist and scientific associate of the Aristotle University of Thessaloniki delivered Mr. Marc-Antoine Wuidart’s presentation (who was unfortunately unable to attend, due to a family emergency), regarding the Liege Cystic Fibrosis Centre, in which, in 2015, the physiotherapy regime was altered for patients with Cystic Fibrosis, following the case of a fourteen year old boy who showed a slight exacerbation of his condition with the treatment he was receiving at the time, which consisted of 3-4 days of hospitalisation. With the new regime, patients are hospitalised for 14 days, with coordinated care throughout the day, resulting in an increase in their respiratory function.

The intensive regime in Zeepreventorium that physiotherapist Ms. Anne-Catherine Chapelle presented caused quite an impression, describing how patients remain at the Centre for 2-3 weeks, with an all-day set of treatments, which result in a gradual increase in their respiratory function.

In the exercise segment, Professor of the University of Newcastle, Mr. Ioannis Vogiatzis presented the respiratory rehabilitation regime for adults (which recently received a prize) which was first implemented in Greece, displaying the benefits that arise from using intermittent exercise as compared to a continuous regime.

Following that presentation, Ms. Zoe Saynor, Senior Lecturer at the University of Portsmouth presented the exercise network she’s participating in, noting that healthcare professionals should be working to implement multi-modal exercise testing within all Cystic Fibrosis Units, in order to evaluate the fitness of people with the disease and highlight those who require more intensive therapy, and how people with Cystic Fibrosis can benefit hugely from more focus on using exercise as a treatment method.

Mr. Filip Pyl, physiotherapist from the Gent Cystic Fibrosis Unit presented the exercise protocols used for patients with Cystic Fibrosis and the parameters that dictate their ability to cope with each individual regime.

The healthcare professionals who participated in both parts of the main segment, demonstrated techniques and the devices used in their respective unit, on participating patients, allowing the direct comparison of the results from each regime, while at the same time interacting with doctors from the Greek units, leading to further comparison between national and international methods.

Ms. Petrochilou and Chatziagorou and Mr. Vogiatzis at the coordinators’ panel.

In the final segment, Mr. Dimitris Kontopidis presented the “Breath Unlimited” project; a bet for unlimited breath for Cystic Fibrosis patients, in order to increase their life expectancy, by adding exercise to their daily life. Based on a study that he cited, patients with Cystic Fibrosis who received intensive exercise regimes and increased their respiratory function, showed a survival rate of 83% after 8 years, while, at the same time, patients with marginal shifts in their respiratory function showed a survival rate of 28%.

President of the Hellenic Cystic Fibrosis Association, Mr. Dimitris Kontopidis.

The audience and international healthcare professionals were excited to see the “Breath Box”, an innovative exercise box that can be used to avoid cross-infections for Cystic Fibrosis patients who work in a common space, by implementing the latest technology to maximise the exercise and physiotherapy their receive and in order to promote the creation of patient communities. Following the presentation, a video-call was established with the representative of the team that created the mobile application “MyCyFAPP”, which allows patients with Cystic Fibrosis to monitor and record data regarding their nutrition, exercise, physiotherapy and respiratory function, as well as provides tips in order to improve the effectiveness of their daily treatment.

Η κ. Leonie Hodkevitch κατά την παρουσίαση της διαδικτυακής πλατφόρμας “ Hitchhiker’s Guide to CF Galaxy”.

To end the Conference, the President of the Cystic Fibrosis Association of Austria, Ms. Leonie Hodkevitch presented the web-platform that focuses on raising awareness for Cystic Fibrosis and on connecting patients from all over the world, “Hitchhiker’s Guide to CF Galaxy”. The platform may function as an open-call to the community, in order to develop a collaboration network between patient representatives from various countries.

The touching donation of Ms. Noordhoek’s book to

Ms. Anna Spinou, Katerina Drapanioti and Elpida Chatziagorou.

A special moment during the conference occurred when Ms. Noordhoek donated copies of the book she wrote, describing her life with her son, a Cystic Fibrosis patient, to Ms. Anna Spinou, a patient who aspires to become a mother, Ms. Katerina Drapanioti, the mother of a Cystic Fibrosis patient, and Ms. Elpida Chatziagorou, a pediatrician who specialises in Cystic Fibrosis and also a mother. During the conclusion of the conference, Mr. Dimitris Kontopidis stated “We often come to the realisation that women who deal with Cystic Fibrosis, particularly mothers of patients, show tremendous strength.”

The speakers and coordinators of the Conference and the members of the Board of Directors of the Hellenic Cystic Fibrosis Association.

The coordinators’ panel during Ms. Zoe Saynor’s presentation.

Conference participants during the break.

Ms. Anne-Catherine Chapelle during her presentation of physiotherapy methods used in the Zeepreventorium rehabilitation centre.

Η κ. Ζoe Saynor κατά την παρουσίασή της για το δίκτυο άσκησης στο Ηνωμένο Βασίλειο.

Η κ. Anne-Catherine Chapelle κατά την παρουσίασή της για τις μεθόδους φυσιοθεραπείας

στο κέντρο αποκατάστασης Zeepreventorium.

Mr. Mark Allenby during his presentation of next-generation medicines for Cystic Fibrosis.

Mr. Ioannis Vogiatzis during his presentation of the exercise programme that was first implemented in Greece.

Ms. Aoife Lynam during her presentation on the importance of nutrition for patients with Cystic Fibrosis

Ms. Elizabeth Shepherd during her presentation of the physiotherapy programme in the

Southampton Cystic Fibrosis Unit.