Cystic Fibrosis: Frequently Asked Questions
What is cystic fibrosis?
Cystic Fibrosis (CF) is a genetically-inherited diseased in which the respiratory system produces abnormally thick and sticky mucus. This impairs the lung and digestive function, deteriorating both until death occurs. In 1992, we found out that Meghan had it.
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Cystic fibrosis is the most common serious disease amongst Europeans and it is caused by a faulty gene. Cystic fibrosis affects the lungs and the digestion from birth.
Source: www.antenataltesting.info
Cystic Fibrosis (CF) is a recessive genetic condition. The gene involved in CF gives instructions for the cells to make a protein that controls the movement of salt in and out of cells. This salt transport gene lies on chromosome 7. Everyone has two copies of chromosome 7 and therefore everyone has two copies of the salt transport gene. Scientists have called it the CFTR (Cystic Fibrosis Transmembrane Regulator) gene.
Source: www.cysticfibrosis.org.au
Cystic fibrosis is a disease that causes mucus in the body to become thick and sticky. This glue-like mucus builds up and causes problems in many of the body's organs, especially the lungs and the pancreas . People who have cystic fibrosis can have serious breathing problems and lung disease. They can also have problems with nutrition, digestion, growth, and development. There is no cure for cystic fibrosis and the disease generally gets worse over time. ...
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It is an inherited disease that mainly affects the lungs, causing thick mucus build-up that results in chest infections. It can also affect the bowels and the pancreas, causing blockages and poor absorption of digested foods.
Source: www.personal.psu.edu
Why Cystic Fibrosis?
Cystic Fibrosis is the nominated charity of the Steve Dawson the M.D of Swift Solutions Ltd and the owner of the City Sites Network. This site is dedicated to the memory of Clair Dawson 10th May 1983 - 8th July 1996.
Source: www.thecharitymillion.co.uk
How is cystic fibrosis diagnosed?
Depending on the severity of the disease, symptoms may be apparent soon after birth, some may escape detection for months, even years depending on severity. A good indicator of a baby having cystic fibrosis is that they tend to taste salty if you lick them, and while this is not always accurate, it can tell parents that there might be something wrong with their child. A "sweat test" performed in hospitals measures chloride more accurately, which will detect the condition. ...
Source: www.antenataltesting.info
The main test for CF is called the sweat test and it measures the amount of salt in sweat. Starting in 2002, all babies born in New York State are tested at birth as part of a series of tests on newborn babies. If there is reason to think a child has CF, the test should be done in an accredited CF Care Center .
Source: www.health.state.ny.us
Is cystic fibrosis fatal?
Currently, there is no cure for cystic fibrosis. However, specialized medical care, aggressive drug treatments , and therapies , along with proper CF nutrition , can lengthen and improve the quality of life for those with CF. The best way for people with cystic fibrosis to fight their disease is to work with their medical caregivers at a CF Foundation-accredited care center . The care center partners with people who have CF to help keep them in the best health possible.
Source: www.cff.org
Who gets cystic fibrosis?
Approximately 30,000 people in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. The disease is most common in Caucasians, but it can affect all races. The severity of cystic fibrosis symptoms is different from person to person. ...
Source: www.cfvoice.com
Approximately 30,000 people in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. The disease is most common in Caucasians, but it can affect all races. The severity of cystic fibrosis symptoms is different from person to person. ...
Source: www.cff.org
Is there a cure for cystic fibrosis?
There is no cure, however, research is ongoing and new treatments are being developed.
There is no cure for CF at this time, but ongoing research has led to advances in treatment, which have significantly improved the lives of many CF patients. New discoveries in the treatment of CF have helped people with the disease live longer. Twenty years ago, only half the people with CF lived beyond age 21, but today half the people with CF live past 35 years of age.
Source: www.health.state.ny.us
What is the Cystic Fibrosis Foundation?
The Cystic Fibrosis Foundation was established in 1955 by a group of parents whose children were afflicted by the disease. The mission of the CF Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
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When will all babies be screened for cystic fibrosis?
Screening for cystic fibrosis is being phased in gradually throughout the UK. All newborn babies should be routinely screened for cystic fibrosis by April 2007.
Source: www.ich.ucl.ac.uk
How do you get cystic fibrosis?
It's not contagious. You can only get it by inheriting a CF gene from your mother and your father. One in 28 caucasians, including both of Meghan's parents, unknowingly carries the CF gene. Carrying only one CF gene has no effect on one's health. If two carriers have a child, there is a 25% chance that the child will be "clean" (no CF genes), 50% chance that the child will be a carrier (one CF gene), and a 25% chance that the child will get two genes, and thus have the disease. ...
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Cystic fibrosis is inherited in an autosomal recessive pattern, which means two copies of the gene must be altered for a person to be affected by the disorder. Most often, the parents of a child with an autosomal recessive disorder are not affected, but are carriers of one copy of the altered gene. Mutations in the cystic fibrosis conductance regulator (CFTR) gene cause this disease. The protein made by CFTR controls the movement of salt and water into and out of cells. ...
Source: www.dhss.mo.gov
What is the common name for Cystic Fibrosis?
Date: 2005-07-21 Time: 20:06:19 Name: Emily Cystic Fibrosis is often shortened to its initials, CF. CF was first identified and recognised as its own seperate condition by Sidney Farber, in Boston in 1943 (cited in article on cysticfibrosismedicine.com). Initially named Mucoviscidosis, the name was later changed to Cystic Fibrosis. Many countries still use the original name as the stem (for example the French for CF is Mucoviscidose). Question: 19 Date: 2005-04-05 Time: 03:24:40 Name: Jessica
Source: www.pwcf.net
What is another name for cystic fibrosis?
Date: 2006-01-09 Time: 15:47:56 Name: Emily Cystic Fibrosis is often shortened to its initials, CF. CF was first identified and recognised as its own seperate condition by Sidney Farber, in Boston in 1943 (cited in article on cysticfibrosismedicine.com). Initially named Mucoviscidosis, the name was later changed to Cystic Fibrosis. Many countries still use the original name as the stem (for example the French for CF is Mucoviscidose). Question: 39 Date: 2005-12-15 Time: 19:33:44 Name: Anon
Source: www.pwcf.net
Is IPF the same as Cystic Fibrosis?
Cystic Fibrosis is a genetic disease that causes the body to produce abnormally thick, sticky mucus, due to the faulty transport of sodium and chloride (salt) within cells lining organs such as the lungs and pancreas, to their outer surfaces. It primarily affects children. IPF is a completely different clinical diagnosis.
Source: www.coalitionforpf.org
Does a person with Cystic Fibrosis look different?
While people with cystic fibrosis have no distinctive physical alterations, they might be shorter and smaller than the average person. It is important to note too, that cystic fibrosis comes in different degrees of severity, so not all sufferers are the same.
Source: www.antenataltesting.info
How does cystic fibrosis affect a person?
Cystic fibrosis is a multisystem disease, in other words, it affects several systems of the body. It causes chronic respiratory illnesses, malabsorption, and electrolyte imbalance.
Source: www.antenataltesting.info
Why not add screening for cystic fibrosis?
The 79th Texas Legislature in 2005 mandated that DSHS expand to the ACMG-recommended panel of disorders as funding allowed and appropriated $3.1 million. The startup funding allows 20 additional disorders to be added to the screening panel. Cystic fibrosis startup would require an additional $2 million to $3 million.
Source: www.dshs.state.tx.us
The 79th Texas Legislature in 2005 mandated that DSHS expand to the ACMG-recommended panel of disorders as funding allowed and appropriated $3.1 million. The startup funding allows 20 additional disorders to be added to the screening panel. Cystic fibrosis startup would require an additional $2 million to $3 million. LABORATORY SERVICES FOR NEWBORN SCREENING
Source: www.dshs.state.tx.us
How Common is Cystic Fibrosis?
CF is one of the most common inherited diseases of Caucasians (whites). CF occurs in one of every 3,200 live Caucasian births. It occurs in one in every 15,000 live African-American births. CF is uncommon in Asians and most Native American tribes. It is being seen more often in Hispanics. CF affects almost every race. About 1,000 new cases of CF are diagnosed each year.
Source: www.health.state.ny.us
What Are the Symptoms of Cystic Fibrosis?
People with CF can have several symptoms including very salty-tasting skin; steady coughing at times with phlegm; wheezing or shortness of breath; a huge appetite but remains thin; and large, greasy stools. These symptoms are different from person to person.
Source: www.health.state.ny.us
How Is Cystic Fibrosis Treated?
There are many treatments for the symptoms and CF related problems. Treatment is aimed at preventing lung infections, reducing the amount and thickness of mucous in the lungs, improving airflow and maintaining nutrition.
Source: www.health.state.ny.us
Is cystic fibrosis always fatal?
Unfortunately, at the moment, it continues to be a fatal disease, however, great strides have been made in research and treatment. At one time, children affected with this disease were not expected to live much past seven years of age, but today, the average lifespan is 30 years.
How safe are clinical trials for cystic fibrosis?
Nothing is more important than safety in developing new cystic fibrosis treatments. There are four layers of protection in every clinical trial for cystic fibrosis. Each trial must be determined as safe and appropriate for patients by 1) the CF Foundation, 2) the FDA, 3) the participating hospital or university’s Institutional Review Board (IRB), and 4) the Data Safety Monitoring Board (DSMB). ...
Source: www.cff.org
How did cystic Fibrosis get its name?
Date: 2006-06-17 Time: 13:49:11 Name: Sholto While references to cystic fibrosis symptoms can be found as far back as the 1600s, the term ‘cystic fibrosis’ can be traced to early publications of the condition by Fanconi and colleagues in 1936 who described two children with “cystic pancreas fibromatosis and bronchiectasis”. ...
Source: www.pwcf.net
