“Cystic fibrosis (CF) is a progressive, genetic illness that causes persistent lung infections and limits the ability to breathe over time (About Cystic Fibrosis, n.d.).” People with CF produce a mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene affecting the cells of the body that produce mucus and sweat (ALA, n.d.). The build up of thick mucus in the lungs clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications; therefore minimizing contact with germs is a top concern for people with CF. (About Cystic Fibrosis, n.d.). According to the Cystic Fibrosis Foundation, CF also causes damage to the digestive system due to the buildup of mucus in the pancreas, which prevents the release of digestive enzymes that help the body absorb key nutrients, resulting in malnutrition and poor growth. There is currently no cure for cystic fibrosis, but current treatments have been found to improve care and steadily increase the average life expectancy to 40 years old.
Depending on the child’s stage of development, here are some key words you can use when explaining cystic fibrosis to children:
• Cystic Fibrosis is a life-long disease that causes the body to make thick, slimy mucus. This slimy mucus can clog the lungs and make it difficult for people to breathe. It also creates a place where bacteria can easily grow — and bacteria can cause infections.
• Lungs – body parts in your chest that take in and push out air to help you breathe
• Mucus – just like the sticky stuff in your nose, which protects certain parts on the inside of your body
• Digestive System – the part of your body that is in charge of taking the food you eat and breaking it into smaller pieces so that the rest of your body can use it as energy
• Bacteria – unhealthy germs that can make you sick
• Genes – information in your body that determines how you look and other things about your body
According to Cystic Fibrosis Foundation, individuals with Cystic Fibrosis have a variety of symptoms, including:
• Very salty-tasting skin
• Persistent coughing, at times with phlegm
• Frequent lung infections including pneumonia and bronchitis
• Wheezing or shortness of breath
• Poor growth or weight gain in spite of good appetite
• Frequent greasy, bulky stools or difficulty with bowel movements
• Male infertility
The Cystic Fibrosis Foundation highlights a combination of therapies that many people with CF complete each day. These therapies include:
• Airway clearance
• Inhaled medicines
• Pancreatic enzyme supplement
• Individualized fitness plan
• CFTR modulators
Cystic Fibrosis Facts from Cystic Fibrosis Foundation
• Both parents must be a carrier of the defective CF gene for the child to have CF.
• More than 30,000 people are living with cystic fibrosis (more than 70,000 worldwide).
• More than 75 percent of people with CF are diagnosed by age 2.
• More than half of the CF population is age 18 or older.
Resources
- Websites
- Books
- The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis by Andy Lipman and Anthony Weiss
- Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever by Bijal P. Trivedi
- Every Breath I Take: Surviving and Thriving with Cystic Fibrosis by Ms. Chynna Bracha Levin and Ms. Clare Wineland
- Organizations and Foundations
- Clare’s Place Foundation
- Blooming Rose Foundation
- Cystic Fibrosis Foundation
- Breathe 4 Tomorrow Foundation
- Cystic Foundation Lifestyle Foundation
- Cystic Fibrosis Research, Inc
- Help One Love One
- Lungs for Life Foundation
- CF Living
- Applications
- CF Buzz
- MediSafe
- Muckbusters
- My Fight Against Cystic Fibrosis
- My CF (Cystic Fibrosis)
- CF-Notebook
- Bacteria Battle
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References
About cystic fibrosis. CF Foundation. (n.d.). https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/.
Learn about cystic fibrosis. American Lung Association (ALA).(n.d.). https://www.lung.org/lung-health-diseases/lung-disease-lookup/cystic-fibrosis/learn-about-cystic-fibrosis.