Charlie Meserve, 10, ponders his next chess move on the 9th floor at Children’s Hospital Colorado.
Meserve is a clinical trials participant and Dr. Accurso’s patient.
On a daily basis, a cystic fibrosis (CF) sufferer like Charlie Meserve may take up to 15 pills and invest at least one hour for lung treatments. Patients with severe CF may take up to 60 pills and undergo two-and-a-half hours of treatment daily. “It takes hours a day to live with cystic fibrosis,” says Frank Accurso, MD, professor of epidemiology at the Colorado School of Public Health. “Patients carry a tremendous burden of care.”
Due to abnormalities in the protein CFTR (cystic fibrosis transmembrane conductance regulator), CF sufferers cannot normally clear mucus from their airways. This leads to breathing challenges and results in serious illness. When first defined in 1938, children with CF seldom lived beyond infancy. Today the average life expectancy for people with cystic fibrosis has increased to 37 years, thanks to the advent of inhaled antibiotics, mucus-thinning medication, newborn screening and cystic fibrosis centers like the one at Children’s Hospital Colorado at the CU Anschutz Medical Campus.