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What is Cystic Fibrosis?
- Cystic fibrosis (CF) is the most common,
fatal hereditary disease in the U.S.
- CF is a disorder of the cells that line the lungs,
small intestines, sweat glands and pancreas. Sticky, thick mucus contributes
to the destruction of lung tissue and impedes gas exchange in the lungs. It
also prevents nutrient absorption in the small intestines, and blocks
pancreatic ducts from releasing digestive enzymes. Approximately 85% of
all people with CF cannot properly digest their food without supplemental
enzymes.
- People with CF exhibit some or all of these
common symptoms, to varying degrees:
- salty-tasting skin
- excessive appetite along with poor weight gain
- loose, foul-smelling stools
- persistent cough, wheezing or pneumonia
Other symptoms may include the following:
- clubbed fingers
- digestive disorders
- smaller than average in height and weight
- susceptibility to heat prostration and dehydration
- male sterility
- diabetes and/or liver disorders
CF patients are frequently hospitalized for chronic
lung infections and digestive disorders.
People with CF must follow a strict regimen for
the treatment of this disease. This regimen includes taking medications
such as antibiotics to fight respiratory infections, enzymes to aid in
food digestion, and vitamins to improve general health. Some people with CF
use aerosols to open restricted airways. To dislodge mucus from the lungs,
people with CF must undergo chest physical therapy or other therapy methods;
in some cases, they must use oxygen. People with CF also must follow a strict
diet, and avoid people with colds or infections.
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How Common is CF?
- Anywhere from 25,000 to 30,000 American children and adults have CF.
- One in 3,900 American children is born with CF.
- Approximately 1,000 new cases are diagnosed each
year. Improved diagnostic techniques have resulted in newly identified cases
in people of all ages.
- Ten million Americans are symptomless carriers of the CF gene.
- At present, only half of those with CF survive to age 36.8.
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How Do You Know if You or
Your Child Has CF?
- Review the list of symptoms as described in this
fact sheet.
- If you or your child has most of the symptoms
indicated, you should ask your doctor about having a "sweat test."
The sweat chloride test is a reliable tool for diagnosing cystic fibrosis.
This simple, painless test measures the amount of salt in the sweat. A high
level of salt indicates that a person has CF. Recently developed genetic
techniques using DNA analysis can be definitive when positive, but because
hundreds of alleles can cause CF, no single genetic test works in all cases.
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What Can You Do If You Have CF?
- Contact your physician immediately and follow
the medical advice you are given.
- Become educated about the disease. Attend support
groups, conferences, educational meetings, and read newsletters that are
available through CFRI.
- Dont become discouraged. Many new advances
in research provide hope for all who have this disease. Scientists have
discovered the gene that causes CF and gene therapy research is moving
forward. While there is no cure for CF at present, many recent developments
in medicine such as a new drug that reduces infections by breaking up thick
mucus accumulations make it easier for people to live their lives with
this disease.
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What Does CFRI Do About CF?
- CFRI is an independent, nonprofit volunteer
organization that is dedicated to saving the lives of children and adults
with cystic fibrosis. We were founded in 1975 in order to fund life-saving
research and sponsor educational programs.
- Since our founding in 1975, CFRI has funded over
$7.5 million toward cystic fibrosis research projects. Our educational
program includes publishing a CFRI newsletter and educational brochures
that are circulated to 14,000 readers throughout the world. We hold support
meetings and talks on CF research and living with CF. CFRI also sponsors an
annual educational conference for the CF community, as well as a summer
retreat for young people and adults with CF.
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How Can You Assist CFRI?
- Volunteer to help us raise funds for our research
and educational programs.
- Participate in our major fundraising events,
such as the annual golf tournament or our Mothers Day Tea solicitation.
- Contribute funds to support the significant
research that is taking place in universities and research centers throughout
the United States.
To find out how you can offer your much
needed time and talents to CFRI, please
contact us today. |
Click Here
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