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Cystic Fibrosis – Standing still is moving backwards | Eva Van Braeckel | TEDxVlerickBusinessSchool

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Cystic fibrosis (CF) or mucoviscidosis is a genetic disorder caused by mutations in the CFTR gene. The resulting defective CFTR protein disturbs the balance of salt and fluids inside and outside the cell, which leads to the production of thick, sticky secretions in the lungs, pancreas and intestine. Patients suffer from progressive breathing difficulties and have to spend hours coughing up mucus to prevent further damage and lung infections. Recently, a new era has arrived in the treatment of CF, with the development of CFTR modulators improving the function of the CFTR protein. Patients taking these drugs in clinical trials and beyond, experience an almost immediate effect: thanks to rehydration of the mucus inside their lungs and other organs, their symptoms are largely relieved. Obviously, this precision medicine comes at a cost. As a society, we will have to deal with an important dilemma: what is the value of a qualitative life? In this talk, I will illustrate the patients’ experiences behind the facts and figures. Treating cystic fibrosis – standing still is moving backwards.
Cystic fibrosis (CF) is a genetic disorder caused by mutations in the CFTR gene. The resulting defective CFTR protein disturbs the balance of salt and fluids inside and outside the cell, which leads to the production of thick, sticky secretions in the lungs, pancreas and intestine. Patients suffer from progressive breathing difficulties and have to spend hours coughing up mucus to prevent further damage and lung infections. Recently, a new era has arrived in the treatment of CF, with the development of CFTR modulators improving the function of the CFTR protein. Patients taking these drugs in clinical trials and beyond, experience an almost immediate effect: thanks to rehydration their symptoms are largely relieved. Obviously, this precision medicine comes at a cost. As a society, we will have to deal with an important dilemma: what is the value of a qualitative life? This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

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