Cystic Fibrosis is a devastating diagnosis for a parent to hear, because it means that their child will have to endure a lifetime of fighting illness. Thanks to advancements in medicine and research, however; it is not nearly as devastating as it once was. It is a genetic disease that affects over thirty thousand people in the United States and approximately seventy thousand worldwide (CF Foundation, 1). Approximately one thousand new cases are diagnosed each year. (CF Foundation, 1). It is usually diagnosed before a child reaches the age of two and affects the child throughout life (CF Foundation, 1).
The disease is genetic which means that both parents of the affected child have to have a recessive gene for the disease. The parents however do not have the disease themselves or have any symptoms of it. The gene that causes the disease was not detected until 1989 (March of Dimes, 1). Since the discovery of the gene, a screening test has been made available for people with a family history of Cystic fibrosis to determine if they are at risk of having a child with the illness (March of Dimes, 1).
It is a disease of the mucous and sweat glands and affects mostly the lungs, pancreas, liver, intestines, sinuses and sex organs (Medlineplus, 1). The disease affects the movement of salt into and out of the cells lining the lungs and pancreas, which causes mucous to get thick and sticky, which clogs the lungs and makes bacteria grow in the lungs (Medlineplus, 1). Because of the bacteria and mucous build up in the lungs, people with Cystic Fibrosis have recurring lung infections and difficulty breathing.
These recurring infections lead to permanent damage of the lungs. In the pancreas the illness keeps enzymes from breaking down and absorbing food properly (CF Foundation, 1) Most of the people with the disease are children or young adults this is largely due to the shortened life span caused by the disease. In the past, people diagnosed with Cystic Fibrosis could only expect to live into teen years or the early twenties, but with the recent advances in the medical field the average age of survival is now around the age of thirty seven (CF Foundation, 1).
Most people experience some symptoms and are diagnosed in the toddler years, while others do not experience severe symptoms until later childhood or teen years (Medlineplus, 1). Some of the most obvious symptoms of the disease include salty tasting skin, persistent coughing often producing phlegm, frequent lung infections, wheezing or shortness of breath, poor growth rate or lack of weight gain even if the child eats well, frequent greasy stools and occasional difficulty with bowel movements (CF Foundation, 1).
The disease is usually first detected when a child has had recurring lung infections, a specific kind of bowel blockage at birth, or is not gaining weight (March of Dimes, 1). The children’s sweat can be tested for the disease or gene testing can be done on the blood or saliva. In young children the sweat test is the usual method (March of Dimes, 1). There is no cure for Cystic Fibrosis, but there are a number of treatments available to help people with the illness have the best possible quality of life.
Many affected people need daily respiratory therapy which includes either manually patting the chest or using a machine to tap on the chest to loosen the mucus (March of Dimes, 1). A combination of mucus thinning medicine, antibiotics, bronchodilators, and anti-inflammatory medications to help prevent and control infection (March of Dimes, 1). As the person gets older, the recurring infections leave the lungs severely damaged, thus making the infections harder to treat. In some very advanced cases lung transplant surgeries have become an option (March of Dimes, 1).
In order to help the pancreas digest food properly, many people need to take pancreatic enzymes with each meal (March of Dimes, 1). Eventually the disease wins over all of the treatments and the affected person dies anywhere between childhood and the early forties. Before this happens the person will have survived multiple illnesses which the family fears will be the one that takes their loved one away. Few people live past middle age at the present time, but progress is continual.
The March of Dimes and other organizations have regular fundraisers and campaigns to raise money for research to help develop better treatments and to help find a cure. The disease is a devastating illness and is very difficult for children and their families to live with. Parents must watch as their children constantly fight to survive as each attack gets worse. The only thing the family members can do is watch and hope that the young person will survive each of the horrific infections that threaten life. For these families hope seems fleeting, but the outlook is not as bleak as it was just a few years ago.
As each year passes, the research and the hope for people suffering from the horrible illness get better. New treatments are being developed constantly and possible preventions are being researched. The hope is that one day there will no longer be such a thing as Cystic Fibrosis. Works Cited “About Cystic Fibrosis” 5 June, 2007. 12 March, 2008 from: <Cystic Fibrosis Foundation – ABOUT CYSTIC FIBROSIS> “Cystic Fibrosis” (2008) March of Dimes 12 March, 2008 from: <Cystic Fibrosis – March of Dimes> “Cystic Fibrosis” (2008) MedlinePlus 12 March, 2008. < MedlinePlus: Cystic Fibrosis>