Gov. John Bel Edwards has issued a proclamation declaring May 2018 as Cystic Fibrosis Awareness Month in Louisiana. Additionally, the Governor’s Mansion will be lit purple Thursday evening in an effort to make more people aware of the children and adults diagnosed with Cystic Fibrosis, commonly referred to as CF. CF is a genetic disease affecting approximately 30,000 children and adults in the United States and nearly 70,000 children and adults worldwide, more than 325 of whom live in Louisiana.
“Improving the length and quality of life for those diagnosed with Cystic Fibrosis starts with awareness,” said Gov. Edwards. “We know that screening at birth is the most reliable and least costly method of identifying babies likely to have CF. This is a disease that impacts hundreds of our children and adults and thousands across the world, which is why we need to encourage continued research for a cure.”
More than 10 million Americans are symptomless carriers of the defective CF gene, and CF occurs in approximately one of every 3,500 live births in the United States. The median age of survival for a person with CF is 47.7 years. While there have been advancements in the treatment of CF, the number of adults with CF has steadily grown, and approximately 900 new cases of CF are diagnosed each year.
Early diagnosis of CF permits early treatment and enhances quality of life and longevity and the treatment of CF depends on the stage of the disease and the organs involved. There are four world-class treatment centers in Louisiana which specialize in the diagnosis of CF and the care of patients who have been diagnosed. Improving the length and quality of life for people with CF starts with awareness.