In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
People with CF can have a variety of symptoms, including:
Cystic fibrosis is a genetic disease. People with CF have inherited two copies of the defective CF gene -- one copy from each parent. Both parents must have at least one copy of the defective gene. People with only one copy of the defective CF gene are called carriers, but they do not have the disease (approximately 1 in 23 of the general population . . . that is 12 million people!). Each time two CF carriers have a child, the chances are:
The defective CF gene contains a slight abnormality called a mutation. There are more than 1,800 known mutations of the disease. Most genetic tests only screen for the most common CF mutations.
Cystic fibrosis is a complex disease and the types and severity of symptoms can differ widely from person to person. Many different factors, such as age of diagnosis, can affect an individual's health and the course of the disease.
People with cystic fibrosis are at greater risk of getting lung infections because thick, sticky mucus builds up in their lungs, allowing germs to thrive and multiply. Lung infections, caused mostly by bacteria, are a serious and chronic problem for many people living with the disease. Minimizing contact with germs is a top concern for people with CF.
The buildup of mucus in the pancreas can also stop the absorption of food and key nutrients, resulting in malnutrition and poor growth. In the liver, the thick mucus can block the bile duct, causing liver disease. In men, CF can affect their ability to have children.
Breakthrough treatments have added years to the lives of people with cystic fibrosis. Today the life expectancy of a person with CF is 41 years of age. This is a dramatic improvement from the 1950s, when a child with CF rarely lived long enough to attend elementary school.
Because of tremendous advancements in research and care, many people with CF are living long enough to realize their dreams of attending college, pursuing careers, getting married and having kids. While there has been significant progress in treating this disease, there is still no cure and too many lives are cut far too short.
Each day, people with CF complete a combination of the following therapies:
Today, the Foundation is focused on developing lifesaving new therapies for larger numbers of people with CF and pursuing daring, new opportunities to one day develop a lifelong cure.
Source: cff.org
People living with CF may face additional complications including:
Living with cystic fibrosis entails a broad spectrum of challenges both physically and psychologically. Mental health can be a factor that effects adherence with medications and treatments. Comprehensive treatment often addresses a multitude of complex interrelationships between ongoing and/or temporary issues.
Exercise and living an active lifestyle is one avenue to managing psychological and social challenges related to living with CF, while also offering potential physical benefit.
The CFLF beleives that exercise and activity should and can be used in most instances as an addition to medical treatments. The type of activity, frequency, intensity and time (F.I.T.) should be based on individual levels of ability and in consult with medical professionals. The emotional and psychological benefit of participating in activities is also believed to lead to better self-esteem and adherence with prescribe medical regimine.
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