About being a CF carrier- what does that mean?

So we have gotten several questions about being a Cystic Fibrosis carrier and what does that mean- I think many people are scared and a little freaked out.  We are not trying to share this information to scare anyone- we are trying to inform people.   So I will try to answer the questions as best as possible.  Most of the information that we have been given and stick by is from Cystic Fibrosis Foundation (which we got from our pediatrician and Emory) we try not to read forums about it because we need concrete medical information.  So here is some Q and A's from the CFF website that may help answer your questions:

What is CF?
Cystic fibrosis is a genetic disease that causes the body to make a thick, sticky mucus that clogs the lungs and other organs, such as the pancreas. In the lungs, this mucus leads to chronic infections and progressive loss of lung function.
The mucus blocks the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food, and it can also block the bile duct in the liver, eventually causing permanent damage in approximately 6 percent of people with CF. The disease also affects the ability of most men with CF to have children.
Symptoms of CF include: salty-tasting skin; persistent coughing; frequent pneumonia, wheezing or shortness of breath; a failure to gain weight at the normal rate, perhaps with excessive appetite; and difficulty in having a bowel movement or frequent, abnormal bowel movements.
Today, because of improved medical treatments and care, more than 45 percent of patients with the disease are age 18 or older and many people with CF can expect to live into their 30s, 40s and beyond. Although the outlook for people with CF is improving, there is no cure.

What is a CF carrier? 

We all have thousands of pairs of genes in our bodies. Each pair of genes "tells" our bodies how to look and act, how tall we will be, what color our eyes will be, and so on. Everybody has two CF genes. However, to have cystic fibrosis, a person has to have two altered copies of the CF gene. A person having only one altered copy of the CF gene is called a CF carrier. A carrier does not have, and will never develop cystic fibrosis

 Should I get genetic carrier testing for CF?
Your decision to be genetically tested to learn if you carry a mutation or mutations of the CF gene may be difficult and is a personal choice. You may wish to talk with your medical or religious advisers to help you decide. The American College of Obstetricians and Gynecologists (ACOG) suggests that all couples who are considering having a child — or those who are already pregnant — should be offered genetic carrier testing for CF.

 How does someone inherit a mutation of the CF gene?
People inherit genes from their parents. To have CF, a child must inherit one copy of a mutation of the CF gene from each parent. In other words, the child must have two copies of the defective gene to have CF. They could have two copies of one type of CF mutation, or have a copy of two different CF mutations. Both males and females can have the disease.
A person who has only one copy of one mutation does not have CF and is considered a "carrier" of the CF gene.

 What does a positive genetic carrier test for CF mean?
A “positive” genetic carrier test for CF means that a person has a mutation of the CF gene; this result is more than 99 percent accurate. A "negative" carrier test result is not as accurate. With more than 1,000 different mutations of the CF gene, there are some rare ones that the test does not identify.
Thus, if your test is negative for a mutation of the CF gene, there is still a small chance you could be a carrier of one of the rare mutations. The degree of chance depends on your race or ethnic group and the type of genetic carrier test you receive.

 How common is it to carry a CF gene or to have CF?
The chances of being a CF carrier (with one CF mutation) or having CF (with two CF mutations) depend on your race and ethnicity. CF gene mutations are most common in Caucasian Americans (white people whose ancestors or family are from Europe).

In the U.S., the number of people who carry a CF gene is about:

• 1 in 29 Caucasian Americans;
• 1 in 46 Hispanic Americans;
• 1 in 65 African Americans; and
• 1 in 90 Asian Americans.

In the U.S., the number of people who have CF is about:

• 1 in 2,500–3,500 Caucasian Americans;
• 1 in 4,000–10,000 Hispanic Americans;
• 1 in 15,000–20,000 African Americans; and
• 1 in 100,000 Asian Americans.

 How does CF “appear” when no one in my family has ever had the disease?
Since having one copy of the defective CF gene does not cause symptoms, this copy can be passed down to family members without any impact on their health. Unless they have a child with CF, many people who are carriers of a CF gene do not know it.
Once parents have had a child diagnosed with CF, all of their children should be tested for the disease, whether they are showing symptoms or not. Other relatives also have a chance of being CF carriers and may wish to get a genetic carrier test for CF, or they may wish to be given the sweat test if they are showing symptoms of CF.


Here is a helpful diagram:
The left side can be interchanged with either the father or mother being the carrier- this situation would be where only one parent is the carrier.  The right side both parents are the carriers (like us).