Written and Researched by Natalie Boquist
Even though cystic fibrosis is one of the better known genetic disorders, there are lots of untrue rumours about disease. It is important to educate people about these myths, some of which can be harmful to the cystic fibrosis community.
Overview: Cystic fibrosis is a genetic disorder that affects the mucus glands of those that inherit the mutated gene. A common symptom is mucus accumulation in the lungs, which can lead to breathing difficulties and upper respiratory infections. Cystic fibrosis can be fatal, with lung disease being the most common form of death in cystic fibrosis patients (“Cystic Fibrosis” [CDC]).
Myth 1: People with cystic fibrosis cannot live long lives.
Fact: This is untrue! While the average lifespan for someone with cystic fibrosis is 30 years (“Cystic Fibrosis” [CDC]), recent drug treatments, such as Trikafta, have increased hope for longer lifespans in those with cystic fibrosis. Trikafta is a triple combination therapy, specifically a combination of ivacaftor, tezacaftor and elexacaftor, all of which are drugs that treat the most common mutation of cystic fibrosis (“FDA Approves New Breakthrough Therapy for Cystic Fibrosis”).
Myth 2: Cystic fibrosis is contagious.
Fact: While coughing, a common symptom of cystic fibrosis, is often associated with spreading contagious viruses, cystic fibrosis is not contagious at all. It is a genetic disorder, so only inheriting two copies of a defective cystic fibrosis transmembrane conductance gene, one from each parent, can lead to cystic fibrosis (“About Cystic Fibrosis”). However, those with cystic fibrosis are recommended to stay away from each other by at least 6 feet. This is because infections can be much more deadly for those with cystic fibrosis than the general population, and patients are more likely to contract rarer infections. In order to keep people with cystic fibrosis safe from such infections, most hospitals enforce rules to separate cystic fibrosis patients from each other (“The 6-Foot Rule for Cystic Fibrosis”).
Myth 3: Cystic fibrosis only affects the lungs.
Fact: Many other organs, including the pancreas, liver, and intestines, can be affected by cystic fibrosis. Cystic fibrosis can also lead to weaker bones, and low blood pressure or fatigue since the disorder affects the balance of minerals in the blood (Booth).
Myth 4: Cystic fibrosis has a “set in stone” treatment.
Fact: Everyone with cystic fibrosis is different! As mentioned earlier, Trikafta is a new treatment for cystic fibrosis that treats the most common cystic fibrosis mutation, F508del, which affects over 90% of cystic fibrosis patients. Other common treatments include mucus thinners, anti-inflammatories to reduce airway swelling, and antibiotics for infections. Airway clearance therapy, which involves loosening mucus in the lungs, is also commonly used. Some products, such as vibrating vests, mimic hand motions that can loosen mucus in the lungs. In severe cases, lung transplants can be necessary for people with cystic fibrosis if infections become too antibiotic resistant or severe breathing problems occur. Cystic fibrosis does not reappear in transplanted lungs, though other health problems persist after lung transplants (“Cystic Fibrosis” [Mayo Clinic]).
While cystic fibrosis has been receiving more attention in recent years, there is still a lot of misinformation about the disorder. Staying educated and up to date on developments related to cystic fibrosis is not only vital but also a great way to support those with the disorder!
“Cystic Fibrosis.” CDC, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES, Nov. 1995, www.cdc.gov/scienceambassador/documents/cystic-fibrosis-fact-sheet.pdf.
“FDA Approves New Breakthrough Therapy for Cystic Fibrosis.” U.S. Food and Drug Administration, FDA, www.fda.gov/news-events/press-announcements/fda-approves-new-breakthrough-therapy-cystic-fibrosis.
“The 6-Foot Rule for Cystic Fibrosis.” Cystic-Fibrosis, 7 Feb. 2020, cystic-fibrosis.com/clinical/6-foot-rule.
“About Cystic Fibrosis.” CF Foundation, www.cff.org/What-is-CF/About-Cystic-Fibrosis/.
Booth, Stephanie. “Cystic Fibrosis (Cf): Symptoms, Causes, Diagnosis, Treatment.” WebMD, WebMD, 2019, www.webmd.com/children/what-is-cystic-fibrosis.
“Cystic Fibrosis.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 14 Mar. 2020, www.mayoclinic.org/diseases-conditions/cystic-fibrosis/diagnosis-treatment/drc-20353706.