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Whether you have CF or you're caring for a loved one with CF, talking about it may not always be easy. How much information you want to share is your decision Not everyone needs to know everything at once. You can choose to be open and upfront about CF all at once or choose to share a little at a time. Take whatever approach is best for you. For most people you do tell, it won't make a difference. They'll love you just the same.

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It's to be expected that family, friends, coworkers, and many others are going to ask you questions about CF. Below are some helpful tips and suggestions for how to answer these questions and talk to your loved ones about CF.

Here are some common questions about CF and simple ways to answer them1:

What exactly is CF?1

CF is a genetic disease that mostly affects the lungs and digestive system. Healthy lungs produce mucus. This protects the airways and makes it easier to breathe. For a person like me, with CF, the mucus is thick and sticky and can clog up my lungs.

Is CF contagious?1

No. CF is a genetic disease inherited from your parents.

How many people have CF?1,2

About 30,000 children and adults in the US (70,000 worldwide) have CF. CF is most common in white people, but is found in people of all races and many ethnicities.

What are the symptoms of CF?1,3

There are many symptoms of CF. They include:

  • Frequent lung infections (eg, pneumonia)
  • Salty tasting skin
  • Greasy, bulky stools, or difficulty with bowel movements
  • Nasal polyps (small fleshy growths in the nose)
  • Coughing a lot with phlegm
  • Shortness of breath
  • Poor weight gain (despite a healthy appetite)
Every person has different symptoms.

How is CF diagnosed?1,2

Most people are diagnosed by the age of 2. CF is usually diagnosed by doing a sweat test. This measures the amount of salt in a person's sweat.

Is there a cure for CF?1

Currently, there isn't a cure for CF. People in the medical field are working to help find a cure for CF.

How is CF treated?1

CF is treated in many different ways and can take up a lot of time. Each day, most people with CF typically:

  • Do some form of airway clearance. This helps loosen and get rid of the thick mucus that can build up in the lungs
  • Take liquid medicines that are made into a mist or aerosol. These are inhaled through a nebulizer. They help fight infection in the lungs and keep airways clear
  • Most children and adults with CF need to take pancreatic enzyme supplements during each meal (infants should be fed pancreatic enzymes prior to feeding). These are capsules that help with proper digestion

You may be asked more personal questions. It's up to you how you choose to answer them. As you get older, your social circle will probably grow. Opening up to a trusted friend, coworker, or family member can sometimes be a relief. Use your judgment when deciding who to open up to. Remember, your true friends will love you no matter what.

References: 1. About cystic fibrosis. Cystic Fibrosis Foundation website. http://www.cff.org/AboutCF/Faqs/. Accessed May 1, 2016. 2. 2014 CF Foundation Patient Registry Annual Data Report to the Center Directors. Cystic Fibrosis Foundation website. https://www.cff.org/2014-Annual-Data-Report/. Accessed May 1, 2016. 3. Diagnosed with cystic fibrosis. Cystic Fibrosis Foundation website. https://www.cff.org/What-is-CF/Diagnosed-with-Cystic-Fibrosis/. Accessed May 1, 2016.

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