2. By: Jennifer Novatt

3.  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.

4.  It is an inherited disease of your mucus and sweat glands. It is an inherited disease of your mucus and sweat glands.  It is an inherited disease of your organs and intestines. It is an inherited disease of your organs and intestines.

5.  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.

7.  More than 30,000 infants and elderly More than 30,000 infants and elderly  African Americans African Americans  Only females Only females  Asian Americans Asian Americans  More than 30,000 children and young adults. More than 30,000 children and young adults.  Caucasians Caucasians  Males and Females Males and Females  Latinos Latinos  Native Americans Native Americans

8.  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.

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

11.  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.

13.  Headaches Headaches  Constantly sweating Constantly sweating  Skin tastes salty. Skin tastes salty.  Coughing Coughing

14.  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

16.  Based on results from other tests. Based on results from other tests.  Sweat test Sweat test  If the doctor sees the person sweating constantly. If the doctor sees the person sweating constantly.

17.  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

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

20.  There is no cure. However, treatments have greatly improved. 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. 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. Medicines – help treat or prevent lung infections, reduce swelling, open up the airways, and thin mucus.

22.  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.

23.  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.

24.  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.

25.  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