A lot of people don’t know what Cystic Fibrosis is so, naturally, they have a lot of questions. Here are some of the most frequently asked questions I get. If you have any additional questions you can ask me on the Contact Me page.
Q: What is Cystic Fibrosis (CF)?
A: CF is a genetic disease that causes the mucus that lines the lungs to become very thick and sticky. There is also a digestive component to it, where the pancreas doesn’t create the enzymes needed to break down food.
Q: Why do people with CF cough all the time?
A: Because the mucus in our lungs is so thick and sticky it blocks our airways, therefor it causes us to cough so we can get it out. The problem is that if you cough (assuming you don’t have CF) the mucus would come out rather easily, but if I cough it’s too thick so our body just keeps coughing and coughing.
Q: Is it contagious?
A: No. It is genetic, I got it from my parents and have had it since birth.
Q: Can you die from it?
A: Yes. Not technically from CF, but from the complications it causes. I could die from suffocation from the mucus, an infection in the lungs (which is the most common, we have constant infections that are trapped in by the mucus), and many other complications. A lot f babies need to have surgery within the first two weeks of their lives from bowel obstructions.
Q: What is the life expectancy of someone with CF?
A: The average live expectancy was originally 8 when there weren’t many treatments, but advances in medical research has allowed the age to rise to 37 in the US. That is an average. I, personally, know someone who died at 10, someone who died at 14, 15, 21, and even a man who died at 56.
Q: Why can someone be 25 and be pretty healthy, and then another patient be 13 and be near death?
A: CF is a very individualized disease. Every case is different because it affects each patient differently. Also, girls tend to progress more rapidly in their teenage year than boys do. There are also multiple gene mutations of CF. I have Double Delta F508. Some mutations can affect the digestive tract more than the lungs, and vice versa.
Q: Why is the CF symbol a purple rose?
A: When the Cystic Fibrosis Foundation was first started, it was created by a mother of a young child with CF. One day she was on the phone talking about her son and his Cystic Fibrosis. When she got off the phone, her child came in and said “Mommy, I know why I am sick, what I have.” And she asked him, “What?” and her child replied, “Sixty-five roses.” When you say “sixty-five roses” it sounds like Cystic Fibrosis, especially when a young child says it. That is why the symbol is a rose, and the purple is because that is the color for CF awareness. Similar to a pink ribbon being the symbol for breast cancer.
Q: Does it hurt?
A: Having CF in itself doesn’t hurt, but complications from it can. I didn’t used to have much pain, but lately my chest has chronically been hurting pretty moderately. Also, I have chronic back pain caused by scoliosis, that was caused by my lungs. Most CFers are barrel chested. A lot of CFers also have joint pain from CFRA (CF related arthritis) and bone pain from Osteoporosis caused by calcium deficiency and malnutrition.
Q: Why are you so skinny?
A: I work very hard every single second of my life just to breathe, and then add on top of that all of the constant coughing that I have to do daily. I can eat and eat and eat all day long and still lose weight, because I burn about 7,000 calories a day just from breathing and coughing.