Cystic Fibrosis (CF) is a genetic, progressive disease that has no cure yet and affects the lungs, pancreas, and other organs. The disease leaves those suffering with it susceptible to persistent lung infections and limits the ability to breathe over time.
CF of the lungs causes mucus in the lungs to build up and become thick and sticky, causing frequent lung infections and making it hard to breathe over time. It can also make it difficult to digest food and maintain a healthy weight regardless of diet. The pancreas and other organs can be affected as well.
Read about Jonathan Mechan’s Journey with Cystic Fibrosis
from countless hospital visits as a child and nearly fatal struggles to living a full life thriving as a resilient young man with new lungs.
To be medically specific, mutations in the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) gene cause the CFTR protein to become dysfunctional. When the protein cannot work properly, it’s unable to help move chloride to the cell surface. The chloride attracts water to the cell surface, so without it, the mucus in various organs becomes thick and sticky. The mucus then clogs the airways and traps bacteria, which leads to infections, inflammation, respiratory failure, and other complications.
Symptoms of CF
- Very salty-tasting skin
- Persistent, phlegmy coughing
- Frequent lung infections including pneumonia and bronchitis
- Wheezing and shortness of breath
- Poor growth or weight gain
- Frequent greasy stools
- Difficulty with bowel movements
- Male infertility
Facts & Statistics
- People with CF have to avoid coming into contact with germs as much as possible to avoid infection.
- About 1 in every 35 Americans is a symptomless carrier of the defective CFTR gene.
- More than 1,700 different genetic mutations are known to be a cause.
- 30,000 Americans have Cystic Fibrosis.
- 2 hours a day are spent doing treatments.
- A cure DOES NOT yet exist.
- More than 25 therapies are currently in development.
- Today, more than 75 percent of people with CF are diagnosed by age 2, though some people aren’t diagnosed until later in life.
- Median predicted age is into the 40s.
- CF used to be considered exclusively a childhood disease until medical advancements helped people with the disease reach adulthood.
65 Roses, For Children With Cystic Fibrosis
You’ll hear Cystic Fibrosis referred to as “65 Roses” named by a 4 year old in 1965 who, when hearing the name of the disease he had been diagnosed with, pronounced Cystic Fibrosis as “65 Roses.” Today, young children with the disease often refer to it by this name instead. The rose has become a symbol of the Cystic Fibrosis Foundation.
