In the 1950s, most sufferers of cystic fibrosis died by about the age of 5. Decades of improvements in treatment gradually extended life expectancies. By the late 1970s, kids with CF often made it to their 11th birthday.
The gains have continued. The median age of people with CF who died in 2020 was 34. The prospects are better for kids who will take advantage of more recent treatment improvements earlier in their lives. About half of the kids born with CF between 2017 and 2021 are predicted to live to the age of 53.
Doctors think Trikafta, a new drug combination approved by the Food and Drug Administration in October 2019, could extend lives even more.
The disease, caused by a genetic mutation that makes a certain protein not work right, can affect more than just the lungs. People with CF often suffer many health impacts, including serious digestive issues that make them struggle to avoid malnutrition.
Survival takes work. People with CF often take dozens of pills a day, undergo hours of daily treatments involving cumbersome equipment, and take powerful antibiotics.
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