Cystic Fibrosis Day 2025: Shedding light on an underdiagnosed challenge in Bangladesh

Every year on 8 September, the world observes Cystic Fibrosis (CF) Day to raise awareness, share experiences, and call for better care for people living with this chronic genetic disease.

CF affects the lungs, digestive system, and other organs by producing thick, sticky mucus that blocks airways and ducts, leading to repeated lung infections, poor absorption of nutrients, and gradual respiratory decline.

Globally, more than 162,000 people in 94 countries live with CF, but about 35% remain undiagnosed. In developed countries, advances in screening, specialist care, and CFTR modulator therapies have extended life expectancy beyond 45 years. In Bangladesh, CF is still under-recognised and often mistaken for asthma, tuberculosis, chronic bronchitis and recurrent pneumonia.

A landmark study in Bangladesh by Prof Luthful Kabir and colleagues, using an indigenously developed sweat test, provided the first large-scale insight into the disease in children.

Among 95 suspected cases, symptoms began at an average of 16.9 months, yet diagnosis was delayed for years. Every child had a chronic wet cough, 90.5% had breathing difficulties, and many showed digital clubbing, chest crackles, or thick sputum.

Lung scans revealed bronchiectasis in 60% and pan-sinusitis in 89%, while 37% had signs of malabsorption and 87% were severely underweight. Our experience from more than 300 cases confirms CF exists in Bangladeshi children across all ethnic groups.

Unfortunately, many still believe it is a Western and Caucasian disease, leading to years of misdiagnosis and maltreatment. Globally, treatments like Trikafta and gene therapy are changing lives, but in Bangladesh, these medicines are not easy to obtain.

On CF Day 2025, we must act—through awareness, early screening, a national registry, and better treatment access—so that no child suffers from this disease when it can be easily diagnosed.

The writers are Assistant Professor (Paediatrics) at Saheed Sayed Nazrul Islam Medical College, Kishoreganj, Bangladesh, and Professor & Head (Paediatrics) at Ad-Din Medical College, Mogbazar, Dhaka, Bangladesh, respectively. Email: [email protected]