CYSTIC FIBROSISBy: Jennifer Novatt

Did You Know?

Cystic Fibrosis is sometimes called “65 roses”.

The nickname came from a little boy who overheard his mom talking about the condition on the phone. He thought that each time his mom said “cystic fibrosis”, she was talking about 65 roses.

What is Cystic Fibrosis

It is an inherited disease of your mucus and sweat glands.

It is an inherited disease of your organs and intestines.

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It affects mostly your lungs, pancreas, liver, intestines, sinuses and sex organs.

It causes the body to make thick, sticky mucus and that causes problems in the lungs and the digestive system.

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Who is affected by Cystic Fibrosis?

More than 30,000 infants and elderly

African Americans Only females Asian Americans

More than 30,000 children and young adults.

Caucasians Males and Females Latinos Native Americans

CORRECT!

CF is one of the most common inherited diseases among Caucasians.

About 1,000 new cases of CF are diagnosed each year.

About 1 in every 3,000 babies born have CF.

The disease occurs in 1 in 2,500 to 3,500 Caucasian newborns.

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What are the causes of CF?

A defect in a gene Parents eating too much salty food.

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A defect in the CFTR (cystic fibrosis transmembrane conductance regular) gene causes CF.

This gene makes up a protein that controls the movement of salt and water in and out of the cells in your body.

This causes the thick, sticky mucus and very salty sweat.

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What are the signs and symptoms of CF?

Headaches Constantly sweatin

g

Skin tastes salty. Coughing

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Most of the symptoms are caused by thick, sticky mucus.

Most common are: Frequent coughing Salty-tasting skin Dehydration Infertility (mostly in men) Ongoing diarrhea Huge appetite but poor weight gain Stomach pain and discomfort

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How is CF diagnosed?

Based on results from other tests.

Sweat test

If the doctor sees the person sweating constantly.

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Newborns: Sweat test – measures the amount of salt in

sweat; high salt levels confirms the diagnosis. Children:

Genetic tests – find out what type of CFTR defect

Chest x-ray – to show if lungs are inflamed

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How is CF treated?

There is no cure. With special medicines and tests to take every day.

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There is no cure. However, treatments have greatly improved.

Chest physical therapy (chest clapping) – pounding your chest and back over and over with your hands to loosen mucus from your lungs so you can cough it up.

Medicines – help treat or prevent lung infections, reduce swelling, open up the airways, and thin mucus.

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Good work! Here are some other interesting facts about CF!

Kids with CF have to take care of themselves, but thanks to a better understanding of what causes CF and improved treatment, they can go to school and do regular stuff, just like other kids.

Researchers are working on even better treatments and hoping that one day there will be a cure.

If you have a child with CF, one of the best things you can do is to learn as much as possible.

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Help a child live normally! The goal is to help your child learn to live

with CF, not to make it a way of life. Ongoing care and lifestyle measures can

help you manage the disease. As treatments for CF continue to improve,

so does life expectancy. Today, some people who have CF are

living into their forties, fifties, or older.

What can teachers do when they have a student with CF?

Have days like any other day! Educate the class on the disease!

(collaborating with the child’s parents and the child with CF)

Have an aid with the child or a system to follow when there is a coughing fit.

REFERENCES: The Nemours Foundation, (1995-2009). Cystic Fibrosis. Retrieved April

10, 2009, from Cystic Fibrosis Web site: http://kidshealth.org/kid/health_problems/heart/cystic_fibrosis.html

NHLBI, (2009). Cystic Fibrosis. Retrieved April 10, 2009, from National Heart Lung and Blood Institute Web site: http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_what.html

Mayo Foundation for Medical Education and Research, (1998-2009). Cystic Fibrosis. Retrieved April 10, 2009, from MayoClinic.com Web site: http://mayoclinic.com/health/cystic-fibrosis/DS00287/METHOD=print

U.S. National Library of Medicine, (April 3, 2009). Cystic Fibrosis. Retrieved April 10, 2009, from Genetics Home Reference Web site: http://ghr.nlm.nih.gov/condition=cysticfibrosis

MedicineNet, (1996-2009). Cystic Fibrosis. Retrieved April 10, 2009, from MedicineNet.com Web site: http://www.medicinenet.com/cystic_fibrosis/article.htm