About Cystic Fibrosis

Cystic Fibrosis is a genetic disease that affects over 30,000 adults and children in the US. Each year, thousands of children are born with the disease. Some will be diagnosed through newborn screening programs in their states. Others may be diagnosed before they are even born, through amniocentisis and still others will only discover the disease when a child fails to thrive or gets sick once too often.

So what exactly is CF? You can't catch it like a cold or the flu. A child is born with CF when both of the child's parents has the CF gene as well. Lots of people are CF gene carriers and they never know it. Even if two parents both have a CF gene, there is only a 1 in 4 chance that they will have a child with CF.

In CF, the cells inside the body can't properly process salt. There's an error in the cell membranes and it results in the cells creating thick mucus. That mucus messes lots of stuff up. It gets in the lungs and helps bad germs and bacteria grow there. It gets in the pancreas and makes it hard for someone with CF to properly absorb nutrients and vitamins from anything they eat. People with CF get sick a lot and frequently have lots of lung issues, digestive issues, are at risk for diabetes, sinus infections and polyps, liver issues and reproductive problems.

CF is a terminal disease and today they average life expectancy is around 37 years. That means half of all CF patients will see their 37th birthday - but half of them won't. Some patients live into their 70s, although it's quite rare, and others die in their teens or even younger.

The weird thing about CF is it can be really different for each person that has it. The same exact genes can result in a very mild disease course in one person and very destructive course in another. So much of CF is just plain dumb luck. Today, however, we have more than luck. We have treatments that are extending lives and adding years. Newer and better medications are being developed and each year we get closer and closer to finding a cure.

One day, CF will stand for Cure Found and no one else will have to die from this terrible disease. One day, children like Cassidy, will get to be children and not have to deal with things that no little life should.

For more detailed information about CF please visit the Cystic Fibrosis Foundation at cff.org. There is also a wiki page with lots of good information as well.