Cystic Fibrosis Facts

When we first learned that Crosby had gene markers for Cystic Fibrosis, but before we had the test and received the official diagnosis, we were advised by the folks at Children's Hospital to NOT google. This was hard for a die-hard googler like me. Instead, we both looked on the Cystic Fibrosis Foundation website (www.cff.org) which has tons of current, helpful information. I encourage anyone who wants to learn more about CF to visit the site. For those who may like a quick list, below I've listed 7 things you should know about Cystic Fibrosis:

1.  CF is a life threatening genetic disease that affects around 30,000 people in the United States. About 1,000 new cases are diagnosed each year. 

2.  CF is inherited from the genes of both parents. One in 31 Americans is an unknowing, symptom-less carrier of the defective gene. When two carriers with the mutated gene have a child, there is a 1 in 4 chance the child will have CF.

3.  CF mostly affects the lungs, pancreas, liver, intestines and sinuses. It does not affect the brain.

4.  CF causes a person's mucus to become thick and sticky. The mucus builds up in the lungs and blocks the airways. Lung function often starts to decline in early childhood. Over time, permanent damage to the lungs can cause severe breathing problems or even fatal lung infections.

5. The thick mucus also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

6. CF has no cure. However, treatments have greatly improved in recent years. Treatment may include nutritional and respiratory therapies, medicines, and exercise. Early treatment for CF can improve both quality of life and lifespan.

7. Former NFL Quarterback Boomer Esiason created the Boomer Esiason Foundation to fund research to find a cure for CF after his son was diagnosed in 1993.

Here is Crosby at four weeks old at one of our ACH appointments. You can see that the respiratory therapist is wearing the "gown and gloves" that we mentioned in our first post.

As you can imagine, some of the facts above are a little alarming. Especially when you are brand new parents learning that your precious, tiny baby has a serious, incurable disease. We remain hopeful that because of his early diagnosis (thank you State of Arkansas for doing routine infant screening at birth!) and our commitment to his health, that we can keep him as healthy as possible.

-Carmen and Lance