More than 500,000 people in Greece are carriers of the genetic mutations associated with cystic fibrosis, while more than 900 people in the country live with the disease, according to the Hellenic Cystic Fibrosis Association.
The figures were highlighted as the association marks World Cystic Fibrosis Day on September 8 with a monthlong campaign focused on raising awareness of the disease and the needs of people living with it.
Under the central message “Unlimited Breath,” the association is calling for equal access to healthcare and innovative treatments, improved quality of life and greater opportunities for patients.
As part of this year’s campaign, landmarks across Greece will be illuminated symbolically for cystic fibrosis and pulmonary fibrosis, including the Hellenic Parliament, the “Umbrellas” sculpture by George Zongolopoulos in Thessaloniki and the Rio-Antirrio Bridge.
What is cystic fibrosis?
Cystic fibrosis is an inherited, multisystem disease that patients are born with and that affects several organs, primarily the lungs and pancreas.
Pulmonary fibrosis, by contrast, usually develops during adulthood and affects the lungs, where scar tissue forms and progressively makes breathing more difficult.
The two conditions are different diseases, but they share the lungs and breathing as a common point. The Hellenic Cystic Fibrosis Association and the “Lungs of Life” Pulmonary Fibrosis Association are therefore joining forces under the message: “Two different diseases. Two associations. One shared breath.”
“Behind the word ‘breath’ are things that most people may consider self-evident, but for us patients with cystic fibrosis they are not, such as the ability to live and plan your future, to dream and move forward with as few limitations as possible,” said Anna Spinou, president of the Hellenic Cystic Fibrosis Association.
“For us, World Cystic Fibrosis Day is an opportunity to make the real needs of people living with the disease more visible and turn awareness into action,” she said.
Cystic fibrosis in numbers
More than 500,000 people in Greece are carriers of cystic fibrosis without having the disease themselves.
When both parents are carriers, there is a 25% chance in each pregnancy that their child will be born with cystic fibrosis.
More than 100,000 people worldwide live with cystic fibrosis, while the number of patients in Greece exceeds 900.
Despite significant advances in recent years, living with cystic fibrosis remains demanding. Respiratory physiotherapy, inhaled treatments, medication, exercise and nutritional support are part of systematic care that can take several hours each day.
Patients may also require prolonged hospitalizations for intravenous treatment.
New treatments improve prospects
In recent years, innovative treatments that target the underlying causes of cystic fibrosis have significantly changed the course of the disease for many patients.
These therapies have improved quality of life and created new prospects for people living with the condition. However, cystic fibrosis remains a chronic and serious disease with no definitive cure, and not all patients can benefit from currently available treatments.
For patients who develop end-stage respiratory failure, lung transplantation remains the only lifesaving option, highlighting the critical importance of organ donation.
Webinar on cystic fibrosis and nutrition
The association’s activities will conclude on September 30 with an online webinar titled “Cystic Fibrosis & Nutrition: Modern Approaches and Personalized Care.”
The webinar is organized by the Hellenic Cystic Fibrosis Association in scientific collaboration with the Panhellenic Association of Dietitians-Nutritionists and will feature specialized healthcare professionals.
Beginning at 7 p.m., the event will focus on the modern nutritional needs of people with cystic fibrosis, which vary according to each patient’s age, treatment and clinical condition.
