Κυστική Ίνωση: μια αόρατη πρόκληση ζωής
Cystic fibrosis (CF) is the most common hereditary disease. It is a chronic, non-contagious genetic disease, the symptoms of which usually appear from birth. It affects many systems of the body, mainly the lungs and pancreas.
Πρόκειται για μια χρόνια “αόρατη” νόσο, που δεν φαίνεται πάντα απ’ έξω και επηρεάζει την καθημερινή ζωή όσων πάσχουν. Όμως δεν μπορεί να περιορίσει τη δύναμη, τη δημιουργικότητα και το χαμόγελο των παιδιών και των ενηλίκων που αγωνίζονται για Απεριόριστη Ανάσα.
Η καθημερινότητα των ανθρώπων που ζουν με Κυστική Ίνωση αποτελεί την αφετηρία για τη «Μυστική Αποστολή: Κ.Ι.²». Μέσα από το εκπαιδευτικό πρόγραμμα, η ζωή με Κυστική Ίνωση μετατρέπεται σε ένα ταξίδι γνώσης και ενσυναίσθησης για όλα τα παιδιά. Ένα ταξίδι που βοηθά όλα τα παιδιά να ανακαλύψουν τις δικές τους Κρυφές Ικανότητες που κρύβουν μέσα τους όταν έρχονται αντιμέτωπα με οποιαδήποτε δυσκολία στη ζωή ορατή ή αόρατη.
Πώς επηρεάζει το σώμα
People with cystic fibrosis are born with a defective gene that they inherit from both parents. This gene does not function properly and hinders the functioning of the respiratory system, the digestive system, and other organs. This makes the body's mucus thicker and stickier, clogging the lungs and making it difficult to breathe. The thick mucus also affects the pancreas, making it difficult to digest and absorb nutrients.
Patients need approximately 3-4 hours for their daily lifelong treatments. The treatments do not cure the disease, but slow down its progression. Patient care includes:
- Pancreatic enzymes with every meal for proper digestion of food
- Respiratory physiotherapy & exercise to clear mucus from the lungs
- Special medications that help breathing and the body
- Frequent hospitalizations to treat respiratory flare-ups
- In some cases, lung transplantation
Lung Transplantation & Organ Donation: The Power of Giving
For some people with cystic fibrosis, when the lungs become too tired and cannot function, a lung transplant can give them a second chance.
It is a complex medical procedure, but above all, it is an act of human generosity. Because behind every transplant, there is an organ donor, a person who has given someone else the most precious gift: a second chance at life for unlimited breathing.
Organ donation saves lives and gives hope. When we talk about it in schools and to children, we are not talking about the end, but about the continuation of life.
Θες να ανακαλυψεις περισσότερα για τη δωρεά οργάνων ή να γίνεις δωρητής οργάνων;
Καμπάνια δωρεάς οργάνων «Απεριόριστη Ανάσα – Be a Life Donor»
Εκπαιδευτικό πρόγραμμα για τη δωρεά οργάνων για μαθητές Δημοτικού «Οργανούληδες»
Η ζωή με Κυστική Ίνωση
With proper care and appropriate daily treatments, people with cystic fibrosis can lead rich, active, and creative lives.
Τα τελευταία χρόνια, χάρη στην επιστήμη και τους αγώνες της κοινότητας, η ζωή με Κυστική Ίνωση έχει αλλάξει ριζικά. Νέες θεραπείες στοχεύουν στην αιτία της νόσου, στο ίδιο το γονίδιο. Οι ασθενείς σήμερα ενηλικιώνονται, σπουδάζουν, εργάζονται και κάνουν οικογένεια.
Children and adults living with cystic fibrosis learn the value of patience, strength, and hope every day. With the support of family, friends, and community, every breath is a step closer to their dreams.
Everyone shares the same vision: Every child and every patient should have unlimited breath.
Cystic fibrosis, like any challenge or difficulty in life, cannot define a person.
It is only a part of it – not the whole.
The community of Unlimited Breath
The Panhellenic Cystic Fibrosis Association is one of the longest-standing non-profit patient associations in Greece, founded in 1983. For more than 43 years, it has been bringing together patients, families, doctors, researchers, institutions, friends, supporters, and volunteers with a common goal: information, care, access to treatment and care, and inspiration for life.
Through effective patient advocacy, campaigns, events, and educational programs, a new generation is emerging that understands, accepts, and supports.
Learn more and support our fight for Unlimited Breath!
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