Finding a Cystic Fibrosis Doctor and Understanding Your Disease

Prepare for Your First Cystic Fibrosis Doctor Visit

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It’s important to have a cystic fibrosis doctor – that is, a doctor who’s knowledgeable about cystic fibrosis stays up to date on current research, and follows the Cystic Fibrosis Foundation (CFF) treatment guidelines. In the U.S., your best bet for finding such a doctor is at one of the 120 cystic fibrosis care centers accredited by the CFF. You can visit the CFF website to find cystic fibrosis care centers in your area.

Next, you’ll need to make sure the cystic fibrosis doctor you’re considering is covered by your health insurance plan. What if none of the cystic fibrosis doctors affiliated with the cystic fibrosis care center in your area is in your insurance network? In that case, ask your insurance company if they’ll give you an out-of-network authorization. That way, you can be sure you'll receive the specialized care you need.

Before you visit your new cystic fibrosis doctor, get copies of all of your cystic fibrosis and health records from the other doctors you’ve seen. Bring them with you to your first appointment. If you forget to take them, your new doctor can request them later. However, having them with you will help you get the most from your first visit. So will refreshing your knowledge of cystic fibrosis.

Before Your Visit, Review What You Know About Cystic Fibrosis

What Cystic Fibrosis Is. Cystic fibrosis is a genetic disease that causes repeated lung infections and, over time, makes it harder and harder for you to breathe.

Because it can progress to respiratory failure, cystic fibrosis is considered a life-threatening disease.

Cystic fibrosis is also a complex disease that produces different symptoms and varying symptom severity among those who have it. A person's age when he or she is diagnosed is just one of the many factors that can affect the course of the disease.

What Happens in Cystic Fibrosis. The defective gene that causes cystic fibrosis leads to ​the build-up of thick mucus in your organs, most importantly in your lungs and pancreas.

In your lungs, the mucus clogs your airways so you have trouble breathing. The mucus also traps bacteria in your lungs; the resulting infections cause the lung damage that can lead to respiratory failure.

In your pancreas, the mucus blocks release of digestive enzymes, the substances that normally help your body 1) break down the foods you eat and 2) make use of the vital nutrients they provide.

The Symptoms of Cystic Fibrosis. Here are some typical symptoms that people with cystic fibrosis experience:

  • Persistent coughing that may produce mucus (phlegm)
  • Salty-tasting skin
  • Frequent lung infections, including bronchitis or pneumonia
  • Shortness of breath and/or wheezing
  • In children, poor growth or weight gain even with a good appetite
  • Frequent bulky, greasy stools or problems with bowel movements
  • Infertility in men

There is still no cure for cystic fibrosis, but research is ongoing. People with cystic fibrosis are living considerably longer today than they did before the advent of treatments that, for example, help keep airways clear and reduce the level of mucus in the pancreas.


“About cystic fibrosis.” Cystic Fibrosis Foundation (2016).

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