Cystic Fibrosis Resources

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Admin
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   Posted 4/7/2004 9:34 AM (GMT -7)   
So you found our forum, but do you know about all the wonderful resources HealingWell.com has to offer?  You have a number of places to start:

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Post Edited (Admin) : 11/22/2005 11:28:57 AM (GMT-7)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 11/30/2013 12:53 PM (GMT -7)   
What You need to know about Cystic Fibrosis

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

  • very salty-tasting skin;
  • persistent coughing, at times with phlegm;
  • frequent lung infections;
  • wheezing or shortness of breath;
  • poor growth/weight gain in spite of a good appetite; and
  • frequent greasy, bulky stools or difficulty in bowel movements.

Testing for Cystic Fibrosis

How can you know for sure if you or your child has cystic fibrosis? If someone in your family has the disease, could you pass it down to your children?

There are several ways to help answer these important questions.

Sweat Test If a person shows symptoms of CF or if a baby has a positive newborn screen for CF, a doctor may order a sweat test. This simple, painless test is the best way to diagnose CF. It measures the concentration of salt in a person’s sweat. A high salt level indicates CF.

Sweat tests should be done at a Cystic Fibrosis Foundation-accredited care center where strict guidelines help ensure accurate results.

The sweat test has been the “gold standard” for diagnosing cystic fibrosis (CF) for more than 50 years. When it is performed by trained technicians, and evaluated in an experienced, reliable laboratory, the sweat test is still the best test to diagnose CF.

What happens during a sweat test?

The sweat test measures the amount of chloride in the sweat. There are no needles involved in this test.

In the first part, a colorless, odorless chemical, that causes sweating, is put on a small area on an arm or leg. An electrode is then put over that spot. This lets the technician apply a weak electrical current to the area to cause sweating. A person may feel tingling in the area, or a feeling of warmth. This part of the test lasts about five minutes.

The second part of the test consists of cleaning the area and collecting the sweat on a piece of filter paper or gauze or in a plastic coil. Thirty minutes later, the collected sweat is sent to a hospital laboratory to measure how much chloride is in the sweat.

This sweat test takes about an hour, but it may take longer. When you schedule the test, ask how long it will take and when will you be told the results.

What is a positive result?

For infants up to and including 6 months of age, a chloride level of:

  • Equal to or less than 29 mmol/L = CF is very unlikely
  • 30 - 59 mmol/L = intermediate means that CF is possible
  • Greater than or equal to 60 mmol/L = CF is likely to be diagnosed

For people older than 6 months of age, a chloride level of:

  • Equal to or less than 39 mmol/L = CF is very unlikely
  • 40 - 59 mmol/L = intermediate means that CF is possible
  • Greater than or equal to 60 mmol/L = CF is likely to be diagnosed

Can the test results be uncertain or borderline?

In a small number of cases, the sweat chloride test results fall into “intermediate,” “borderline” or uncertain range. This means that it is between not having CF and having CF. When this happens, the sweat test is usually repeated.

Also, other tests such as genetic testing may be done. These will only be done after you talk with your doctor.

 

The key to living a healthier life.

People living with cystic fibrosis must follow a regular treatment routine to stay healthy and maintain optimal lung function.

Most often, treatment for cystic fibrosis begins with techniques to trigger strong coughs that help loosen and clear thick mucus from the airways. Of course, airway clearance is just one part of the treatment routine. Nutrition and drug therapies are also important for children and adults with cystic fibrosis.

Therapies for Cystic Fibrosis

Thanks to Cystic Fibrosis Foundation-supported research, people with cystic fibrosis (CF) have more therapy options than ever before. There are drugs to help clear the thick CF mucus from airways and reduce inflammation, aerosolized antibiotics and, most recently, a breakthrough therapy that addresses the underlying cause of CF. The Foundation is dedicated to investing in promising research that will lead to more new treatments and a cure for cystic fibrosis.

If you are looking for in-depth information re Cystic Fibrosis here is the link to the Cystic Fibrosis Foundation:

http://www.cff.org/aboutCF/

 

 

 


~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted Today 11:04 AM (GMT -7)   
CF blogs:
 
Faye Upston 
 
 
Cystic Fibrosis Blogroll
 
 
Mastering the Art of Breathing - One Stich at a Time
 
 
Informational Resources only - should never take the place of professional medical care.
 
Thanks, Kitt
 
 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."
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