For Cystic Fibrosis patients and their families, every day is a challenge, a struggle for “Breathless Breath”. Behind each number, there is a story: a child growing up with long hours of treatments, a family tirelessly supporting the patient, and an adult struggling for health and integration into society. Stress, insecurity and demanding treatments affect their quality of life.
In order to bridge these gaps, the Association is developing from 2022 the “Unlimited Breath” psychosocial support programme, offering holistic support to the community, while raising awareness among the wider public. The goals of the program are community empowerment, psychoeducation, support in daily treatments and self-management of the disease, and improving the quality of life of patients and their families throughout Greece.
Pilates exercise program
The Association, in collaboration with the DanceNikol dance school, offers an innovative group Pilates program, specially designed for Cystic Fibrosis patients of all ages. The program is based on the classic Mat Pilates, which aims to:
- Strengthening of respiratory muscles and improvement of respiratory function
- Strengthening the body and improving posture and movement
- Relief from stress and tension, promoting mental well-being
- Improving overall health and quality of life
The group programme is aimed at adult patients, children (10-17 years old) and transplant recipients with Cystic Fibrosis, with online participation via Zoom. In addition, for a limited number of patients, the option to participate face-to-face, with 1 patient in each course, is given as part of the strict adherence to the rules of infection transmission prevention, according to the guidelines for patients with Cystic Fibrosis.
The classes are offered on a voluntary basis by the DanceNikol dance school, which we thank from the bottom of our hearts for its support and generous contribution to patients with Cystic Fibrosis. The biography of the instructor who holds the INSTRUCTOR PILATES diploma of the MK Pilates Academy here.
"Unlimited Breath" helpline
The Association launched the operation of the first national Cystic Fibrosis Helpline in Greece. The “Unlimited Breath” Helpline provides information about Cystic Fibrosis to the general public and psychosocial support to those affected by the disease, such as patients, transplant patients, parents, caregivers, relatives, friends, carriers of the disease, with the aim of empowering the community and raising public awareness in our country. A social worker and a psychologist answer the line. Our team is there for anyone who needs to receive information about Cystic Fibrosis, to share the psychological burden of the disease, to receive guidance on social benefits and community rights, and to get information about the disease, prenatal screening, organ donation, etc.
Helpline is open every Tuesday: 14.00-18.00 (EET), Wednesday & Thursday: 16.00-19.00 (EET)
- Call us at 2110-137700 (local rate for all Greece)
- Email us at helpline@cysticfibrosis.gr
- Chat with us live on the chatbox of the Line or on the Association’s social media
Psychotherapy groups
The Association offers free of charge to its members the psychological support group programme for patients and carers throughout Greece.
The groups educate, guide and empower patients and their caregivers in managing anxiety and negative emotions arising from the disease, improving mood, strengthening assertive behaviour, reframing their lives to new challenges and new circumstances, and introducing bereavement management.
Each cycle of the programme lasts 3 months and the meetings take place online once a week. The patient groups include patients with Cystic Fibrosis over 18 years of age, while the caregiver groups include parents, spouses-partners of patients, family members, etc. The coordination of the groups is done voluntarily by the psychologist Dr. Dipl.-Psych. Stavroula Rakitsi, whom we thank warmly for her contribution. See her biography here.
The results of the project demonstrate that group cognitive behavioural psychotherapy is an important part of the health and mental health of CF patients and their caregivers.
- Watch the speech of Stavroula Rakitzis at the Panhellenic Conference of K.I. 2024 with the results of the 2023-2024 programme here
- Results of the 3rd cycle of the programme in 2024 here
- Results of the 2nd cycle of the programme in 2023 here
- Results of the pilot 1st cycle of the programme in 2022 here
Children's Book
In 2023 the Association created the first interactive children’s book about Cystic Fibrosis in Greece, entitled “Secret Mission: C.I.”. The book aims to help children with Cystic Fibrosis to accept the disease and to show them that if they follow their daily treatment schedule, nothing can limit their lives. The illustration and the writing of the book was undertaken by the famous author of children’s books, Liana Denezaki, in collaboration with the CF Scientific Committee and the BOD of the Association.
The book and the accompanying pouch with the secret agent’s tools are distributed free of charge by the Hellenic Cystic Fibrosis Association and the C.F. Centers to young and old patients with Cystic Fibrosis. But also to anyone who wants to discover the secrets of the disease and to discover the unlimited possibilities that it has, not only for anyone who has Cystic Fibrosis, but also for every person who faces any difficulty in his life!
Browse through the book and get it for free along with the Secret Agent’s gear by pressing the button below.
Benefits- Rights Guide
Because of the demanding management of Cystic Fibrosis, patients and their families often have limited and/or incomplete information about their rights and the detailed procedures they need to follow to access the benefits they are entitled to. This results inthem feeling more insecure and anxious, adding to the psychological burden of the disease.
The Association has created a detailed “Cystic Fibrosis Benefits & Entitlements Guide” on the redesigned website, which is updated regularly. In the guide, CF patients and caregivers can find detailed information and relevant legislation (gazette, government regulations, etc.) on health benefits, allowances, socio-economic benefits, as well as CF-specific regulations on education, employment, retirement, etc. The aim is to inform the Cystic Fibrosis community in our country about their rights and procedures to access benefits that improve their health and quality of life.
Respiratory devices
The Association offers “Unlimited Breath” to patients with Cystic Fibrosis throughout Greece with free respirators:
- nebulisers
- individual spirometers
- portable oxygen concentrator
The aim is to support patients in carrying out their daily treatments and improving their self-management of the disease.
Online support meetings / coffee breaks
The Association organises monthly online support meetings (coffee breaks) for community members (patients, caregivers, etc). The online meetings give the chance to members of the Association from all over Greece to get in touch with each other.
During the support meetings participants share their questions and concerns, their personal experiences and good practices regarding the disease, so that no one feels alone.
There are also open discussions around issues that concern members, such as medicines, treatments, monitoring and care, transplants, benefits- rights. There is also discussion and information on current issues concerning the disease.
The support meetings take place online once a month through the zoom platform, while the date and time of the meeting is announced every month a few days before the meeting. The meeting link is sent by email a few hours before the start of each meeting.
Private Facebook community group
In 2020 the Association created the private facebook group “HCFA || Members’ Communication Group“. The group gives the possibility to to the members of the Association, patients with C.F. and caregivers from all over Greece, to chat and connect with each other ina secure online space, without being publicly exposed to third parties. In the private communication group members are able to:
- participate and/or attend private community discussions on all issues related to Cystic Fibrosis
- exchange views and sensitive information on issues that affect their daily lives
- share their experiences of living with Cystic Fibrosis, as well as good practices, new treatments, etc.
Connect online with the CF community by filling in your details by pressing the button below.
* Since 2012 the Association has created the public group “Cystic Fibrosis-CYSTIC FIBROSIS – GR“, which can be joined by anyone from the Cystic Fibrosis community or the general public interested in being informed about Cystic Fibrosis.
Respiratory rehabilitation programme
In 2014, shortly before the launch of the 2nd innovative CFTR Modulator treatment that “freezes” the disease, the Hellenic Cystic Fibrosis Association started supporting the respiratory rehabilitation program, which included specialized respiratory physiotherapy and personalized exercise for CF patients. The aim of the programme was to keep the patients in the best possible condition and improve their respiratory function.
The programme ran from 2014 to 2016, with two sub-programmes organised and supported by the Association. The first one concerned adult patients in Athens and took place in the Respiratory Rehabilitation Unit of the 1st University Pulmonology Clinic of the “Sotiria” Hospital, in collaboration with the “Thorax” Foundation and the Adult Cystic Fibrosis Unit of the “Sismanoglio” Hospital. The second one concerned children with Cystic Fibrosis in Thessaloniki and was carried out in collaboration with the 3rd Pediatric University Clinic of the Aristotle University of Thessaloniki, the CF Department of the General Hospital “Hippokratio” and the Faculty of Pediatrics of the Aristotle University of Thessaloniki. The results were impressive, as after completing the programme most patients were able to improve their respiratory function by up to 10%.
The results of the program and the benefits of physiotherapy and personalized exercise in Cystic Fibrosis were presented at three-day conferences organized by the Association in 2015 and 2016 in Athens and Thessaloniki entitled “Physiotherapy & Exercise in Cystic Fibrosis”. Specialized doctors and health scientists from Greece and abroad participated in the conferences, informing patients and their families about the value of regular specialized physiotherapy and personalized exercise and training them in physiotherapy techniques. The conferences were also attended by physiotherapy students and health professionals, who were informed about the disease and the specialised physiotherapy techniques in Cystic Fibrosis.
