CF is a genetic disease and the most common life-threatening disease in the Caucasian population. CF clogs the internal organs (especially the lungs and digestive tract) with thick sticky mucus, which makes it very difficult to breathe and digest food. If CF is diagnosed at birth and preventive treatment begun early, patients can live longer and have a higher quality of life. There is ongoing research and development globally with a focus on finding a cure.
There is no cure for Cystic Fibrosis. Children born with this disease will spend their lives undergoing rigorous daily treatment required to keep them healthy and alive. This includes hours of physiotherapy and taking inhaled and intravenous drugs as well as enzyme pills to digest food.
It is estimated that there are between 70,000 and 100,000 people with CF worldwide, but it is difficult to state an accurate figure as people with CF in countries without developed healthcare die before diagnosis. A majority of countries with CF patients have no registries or collected data from health facilities and thousands of CF patients are treated for symptoms without ever being diagnosed.
In the US and UK, average life expectancy is 35 to 40 years old. In countries such as El Salvador, India and Bulgaria, life expectancy drops to below 15. Please visit our member countries’ sites to learn more about CF and the situation for people with CF worldwide.