17 Cystic Fibrosis Facts and Statistics
1. The United States has the highest incidence of cystic fibrosis.
2. According to the Cystic Fibrosis Foundation (CFF), each time two genetic CF carriers have a child together, the probability of the child having CF disease is one in four of the offspring.
3. Interestingly, having a child who carries but does have CF happens in 50 percent of cases, and one in every four children born to two parents with the CF gene will not have or carry cystic fibrosis.
4. There are more than 1,800 known CF mutations, but the exact number of existing mutations is not known and the majority of genetic tests only screen for the most common CF mutations.
5. There are currently an estimated 30,000 people living with cystic fibrosis in the United States alone.
6. More than 75 percent of patients are diagnosed by age two.
7. There are approximately 1,000 new cases of CF diagnosed in the country each year.
8. According to the study “Misdiagnosis of Cystic Fibrosis,” the rate of misdiagnosis is about 4%.
9. Life expectancy for patients with CF has greatly increased over the years. According to CFF’s National Patient Registry, about half of the patients are older than 18.
10. The median age of survival for a person with CF is currently 33.4 years, with patients living into their 50s or 60s. Thirty years ago, a CF patient was not expected to reach adulthood.
11. People of both genders, all races, and all ethnic groups can develop CF.
12. Cystic fibrosis is particularly common among Caucasians of Northern European descent and among Latinos and American Indians, especially the Pueblo and Zuni.
13. The incidence of cystic fibrosis in the European Union is one in 2000-3000 newborns, but discrepancies among the different countries exist.
14. The disease is severely underdiagnosed in Asia. Reresearch on the topic suggests that the prevalence of CF is rare.
15. Adult CF patients tend to experience additional health challenges including CF-related diabetes and osteoporosis.
16. Over 95% of men with CF are sterile.
17. While life expectancy for CF patients has increased, research indicates a decrease in the incidence of the disease worldwide as explained in the study “Evidence for decline in the incidence of cystic fibrosis: a 35-year observational study in Brittany, France.”
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