Cystic Fibrosis Myths and Misconceptions

Like many diseases, myths and misconceptions exist about cystic fibrosis (CF). Some are based on outdated medical information, some on folklore, and some on the fact that many people have never met someone with CF and don’t know what to expect. Here are a few common myths and misconceptions about cystic fibrosis:

Myth #1: It’s a childhood disease

As recently as the 1990s, CF was still mostly a childhood disease. But thanks to advances in care, as of 2017 cystic fibrosis is an adult disease, with 53.5 percent of people with CF are over the age of 18. Most people are diagnosed with CF in early childhood thanks to newborn screening, but people in their 50s, 60s, and 70s are being diagnosed for the first time with CF.¹

Myth #2: It’s more common in males

Cystic fibrosis is actually equally found in males and females. Historically, females with CF had worse outcomes, but that old fact is changing thanks to new medical treatments.¹

Myth #3: Only caucasian children get cystic fibrosis

At one time, doctors did think that cystic fibrosis was primarily a disease that affected Caucasian children of Northern European ancestry. However, due to populations moving and intermarrying and the increased screening of all newborns in the U.S. and many other countries, this data has changed.

Today, we know that there are more than 1,800 genetic mutations that cause different types of CF among people of all ancestries. It is still most common in Caucasians, but those of Hispanic, Native American, African, and Asian heritage are all represented in the CF community.¹

Myth #4: It only affects the lungs

Cystic fibrosis can impact the gastrointestinal system, sinuses, and urogenitary organs as dramatically as it does the lungs. In fact, CF was first officially described in modern medicine in 1938 when a pathologist noticed abnormal tissue in the pancreas of multiple children who had died. What’s more, different mutations of the CF gene mean that there is a huge variation in symptoms among people with cystic fibrosis.²

Cystic fibrosis also impacts the endocrine system. CF-related diabetes (CFRD) affects a large percentage of the adult population with CF. It is recommended that screening for this condition starts in late childhood.³

Myth #5: Cystic fibrosis is contagious

People naturally associate a nasty-sounding cough with a cold, flu or pneumonia. A person with CF inherited the disease and is therefore non-contagious. A person with CF coughs as a natural reaction to their lungs filling with thick mucus. It is not a contagious cough. Actually, people with CF are more susceptible to other people’s colds and other germs than they are a danger to other people.

Myth #6: Smoking causes cystic fibrosis

Cystic fibrosis is caused by a genetic mutation that creates thick, sticky mucus that clogs the airways, bile ducts, intestines, and sinuses. It is not caused by smoking. However, because breathing tends to be difficult for people with CF, exposure to recreational smoke or fires can make it even harder for them to breathe or cause an exacerbation.

Myth #7: Cystic fibrosis is a form of COPD or asthma

No, cystic fibrosis is its own disease and is distinct from chronic obstructive pulmonary disease (COPD) and asthma. As mentioned earlier, CF is caused by an inherited genetic mutation that causes thick mucus to block many body processes from working properly. It is most often diagnosed in early childhood.

Asthma is an inflammation of the airways that may be diagnosed at any age. COPD causes breathing problems like CF but only affects the lungs, not the whole body. COPD is caused by different factors and is usually diagnosed after age 40.

Myth #8: People with cystic fibrosis can eat anything

It’s true that people with CF generally need a diet high in fat and calories. That’s because their disease may make it hard to keep weight on and absorb enough nutrients. But that doesn’t mean a person with CF can live on cheeseburgers and milkshakes. They need plenty of nutritious fruits and vegetables too. Increased respiratory effort and malabsorption in the gut result from an increase in caloric requirements.⁴

Myth #9: People with cystic fibrosis can’t exercise

Perhaps surprisingly, people with CF are encouraged to exercise as much as their individual condition allows. Just like people without CF, exercise builds lung capacity, muscle mass, and helps reduce the symptoms of depression and anxiety.⁴