Greece has 500,000 Cystic Fibrosis Carriers and over 900 Patients

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The Panhellenic Cystic Fibrosis Association is dedicating an entire month this year to raising awareness about cystic fibrosis, with activities launched from yesterday on World Cystic Fibrosis Day, September 8.

Under the central message “Unlimited Breath,” the association is highlighting the modern needs of people living with cystic fibrosis and calling for equal access to care and innovative treatments, better 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, Zongolopoulos’ “Umbrellas” sculpture in Thessaloniki and the Charilaos Trikoupis Rio-Antirrio Bridge.

“Behind the word ‘breath’ lie things that most people may take for granted but that we, as people living with cystic fibrosis, cannot,” said Anna Spinou, president of the Panhellenic Cystic Fibrosis Association.

“These include the ability to live and plan your future, to dream and move forward with as few restrictions as possible.

“For us, World Cystic Fibrosis Day offers an opportunity to make the real needs of people living with the disease more visible and turn awareness into action,” she added.

“Two different diseases. Two associations. One shared breath”

The Panhellenic Cystic Fibrosis Association and the Pulmonary Fibrosis Association “Pnevmones Zois” are joining forces under the message “Two different diseases. Two associations. One shared breath.”

The two conditions differ but share a common focus on the lungs and breathing.

Cystic fibrosis is an inherited, multisystem disease that patients are born with and that affects several organs, particularly the lungs and pancreas.

Pulmonary fibrosis usually develops during adulthood and affects the lungs, where scarring forms in lung tissue and progressively makes breathing more difficult.

Cystic fibrosis in numbers

More than 500,000 people in Greece carry the genetic condition without developing the disease themselves. When both parents carry the condition, each pregnancy carries a 25% chance of the child being born with cystic fibrosis.

More than 100,000 people worldwide live with cystic fibrosis, while Greece has more than 900 patients.

Despite significant advances in recent years, living with cystic fibrosis remains demanding. Respiratory physiotherapy, inhaled treatments, medication, exercise and nutritional support form part of systematic care that can take several hours each day.

Patients also often require lengthy hospital stays for intravenous treatment.

New innovative treatments that target the underlying causes of the disease have significantly changed the course of cystic fibrosis for many patients in recent years. They have improved quality of life and created new prospects.

However, cystic fibrosis remains a chronic and serious disease with no definitive cure, while not all patients can benefit from the treatments currently available.

For patients who develop end-stage respiratory failure, lung transplantation remains the only lifesaving option, highlighting the vital importance of organ donation.

Educational campaign for children

On September 13, the educational campaign “Secret Mission: C.F.² – Cystic Fibrosis & Hidden Abilities” returns to the 54th Book Festival at Pedion tou Areos.

Based on the children’s book of the same name, the initiative features interactive storytelling, games, music, songs and educational activities.

The programme aims to teach children about cystic fibrosis while promoting values such as empathy, acceptance of differences, cooperation and the strength of togetherness.

The event will take place at 6 p.m. on September 13 on the Central Stage of the 54th Book Festival, with free admission.

Webinar focuses on cystic fibrosis and nutrition

The association will conclude its month-long programme on September 30 with an online webinar titled “Cystic Fibrosis & Nutrition: Modern Approaches and Personalised Care.”

The Panhellenic Cystic Fibrosis Association is organising the webinar in scientific collaboration with the Panhellenic Association of Dietitians-Nutritionists, with specialist healthcare professionals taking part.

The event begins at 7 p.m. and will focus on the modern nutritional needs of people living with cystic fibrosis, which vary according to each patient’s age, treatment and clinical condition.

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