Although cystic fibrosis (CF) can affect any racial demographic, Caucasians are the most likely to inherit this lifelong hereditary disease. Cystic fibrosis causes mucus to become sticky and thick, which damages the organs of the body.
About 1,000 new cases of CF are diagnosed in the United States every year.
It is estimated that 30,000 Americans have been diagnosed with this disease and are living with it right now. This makes CF the second most common life-shortening disease that occurs in the US. Although no symptoms may occur at first, cystic fibrosis begins at conception and will often be a contributing cause to a child’s death later on in life.
Who is Affected by Cystic Fibrosis?
- Although the overall birth rate of children with CF in the US is 1 in 3,700, people who are Caucasian and have a Northern European lineage have a 1 in 2,500 birth rate for CF.
- Hispanic populations see a 1:13,500 birth rate for cystic fibrosis. African-Americans have a 1:15,100 birth rate for this disease.
- Asian populations and those of a native ancestry descent have a birth rate of CF that can be as low as 1:100,000.
- About 3,700 people in the US die every year from complications of their disease. About 3,300 of these annual deaths occur in the Caucasian population demographic.
- In 1950, few children born with CF ever made it to elementary school age. By 1985, the median survival rate was 25. Today the median survival rate is 37.
- About 70,000 people worldwide have been diagnosed with CF, making the US the primary hotspot for the diagnosis of this disease.
There have been many improvements made over the years to treat this disease. The problem is that up to 10 million people in the US may be a genetic carrier for cystic fibrosis. Because carriers have no symptoms of the disease itself, there is a 1 in 4 chance that any children they have may be born with CF. That’s why knowing about this disease and understanding the risks if an individual is a carrier are so important.
Life Is Getting Better
- For the first time in history, over 50% of the living population with CF is over the age of 18.
- Minimizing contact with germs is a top priority for those with CF. The disease creates an enhanced risk of developing a lung infection that could be life threatening.
- Since 2012, two new medications have been approved in the US that treat the root cause of cystic fibrosis, which is a defective protein that is called CFTR. It is believed that these two new medicines could extend the median survival rate of this population demographic by decades.
- In 2012, there were 52 known people with CF who were over 40 years old. The oldest living person with CF during this survey was 76.
- Since 2010, all newborns in the US are screened for cystic fibrosis.
Early recognition and treatment of the CFTR protein seems to be helping extend the median survival rate. 61% of all new cases today are caught because of the newborn screening process that has been implemented in all 50 states. Even with early treatment, however, it is important to note that not all newborns thrive because of their CF. That’s why it is so important to immediately consult with 1 of the 120 accredited CF treatment centers worldwide so that every potential option remains available.
How Adults Live With Cystic Fibrosis
- 93% of adults who have CF have graduated from high school or obtained their GED. 1 in 4 will have a high school diploma and 1 in 3 will have attended college at some level.
- 5.7% of adults living with cystic fibrosis have earned a doctorate or a master’s degree.
- 40% of those who have been diagnosed with CF are either married or living together.
- 1 in 3 adults with CF report that they have full-time employment. Only 8% report that they are currently unemployed.
- 17% of adults with CF say that they collect disability payments in lieu of finding employment in some way.
There are over 1,800 known mutations of the CF gene, but it only takes two mutations for a child to be born with this disease. There are still challenges to face with this disease despite the advances in treatment that have been happening, but life is getting better for those with CF. More than 200 women with CF were pregnant in 2010, which is 2x the rate just a decade ago. Men with CF are beginning to have the option to father children as well. As we know more, we can do more, which is why knowing the cystic fibrosis demographics is so important.