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Tips For Summer Camp > A Camp Counselor's Guide to CF

               A Camp Counselor’s Guide to Cystic Fibrosis  

What is Cystic Fibrosis?
Although many people with cystic fibrosis don't appear to be severely ill, CF is a genetic disease, affecting approximately 30,000 children and adults in the United States. CF is a chronic disease, and is characterized by a defective CF gene, which causes the formation of abnormally thick, viscous mucus secretions. The presence of this condition can lead to severe respiratory and digestive problems. One in 31 Americans (one in 28 Caucasians) — more than 10 million people — is an unknowing, symptomless carrier of the defective CF gene. A child must inherit two such genes, one from each parent, to actually have the disease.
Cystic fibrosis is not contagious and affects each person differently. Therefore, one should not make a generalized assumption about an individual's physical and/or emotional health. If you have a child with CF on your team, then assume he/she is in good enough health to fully participate. However, there are some things you should know about the child’s special needs.
What Are The Symptoms of CF?
Because CF produces various effects on the body, the disease may be confused with other conditions such as pneumonia, asthma, or chronic bronchitis. In some cases, people with CF don't appear to be suffering from a serious disorder. Indications may include only some physical symptoms:
·         persistent coughing/wheezing;
·         recurrent respiratory infections; perhaps pneumonia; and
·         excessive appetite but poor weight gain.
Treating Cystic Fibrosis
As the coach of a child with CF, it is helpful to understand the medical routines your student must go through. Treatment for CF varies, depending on how far the disease has progressed, and which organs are affected. Most current treatments are designed to either clear the lungs to make breathing easier, or to treat related digestive problems.
Clearing the Lungs
The viscous mucus produced in CF airways clogs breathing passages. If not removed, the mucus provides a breeding ground for chronic lung infections. Regular hospital visits to receive IV antibiotics is one way to minimize lung damage and improve the overall health of those with CF.

A treatment known as "chest physical therapy" (CPT) may also be needed once or twice a day. During this therapy, the person with CF is clapped vigorously on the back and chest to help dislodge the mucus from the airways. In addition, a machine called a nebulizer is sometimes used to deliver aerosolized mucolitics and antibiotics to the lungs to help open up the airways and prevent or treat respiratory infections.
Coughing is the body's primary method of clearing the mucus that clogs CF lungs. Individuals with CF should not try to restrain coughing either physically or by taking cough suppressants. Your student may feel embarrassed to cough in front of others. Help your student feel comfortable by making it easy for him or her to get a drink of water. In addition, many children have been taught to expectorate the mucus into a tissue so make it easy for your student to be able to do this if needed. 
Paying undue attention to coughing will only embarrass the student. Other team members are likely to follow your lead as the coach - if you accept the coughing as not that unusual - the rest of the team will usually do the same.
Treating Digestive Problems
CF mucus can also obstruct the digestive system and prevents pancreatic enzymes from reaching the small intestine. Without treatment, the body cannot digest food properly. People with CF often need to take pancreatic enzyme supplements with meals and maintain a high-calorie diet to help the body absorb the proper nutrients.
When eating meals and snacks, your student may take many capsules or tablets, including pancreatic enzymes, vitamins and antibiotics. It is not unusual for a person with CF to ingest more than 25 pills a day. Please note that these medications are not habit-forming and will not alter your student's mental or emotional behavior.
Some children prefer to take their medication privately just before eating. Others, unless supervised, may skip their dietary therapy by hiding, "forgetting," or throwing away their pills to avoid taking them in front of their classmates. Discuss with your student and his or her parents the most comfortable routine.
Exercise is particularly beneficial to children with CF. Children with CF should always be encouraged to exercise and play as much as possible. Exercise helps loosen the mucus that clogs the lungs. Because of breathing difficulties, however, some children with CF may not have stamina and may become overly exhausted. Use sound judgment when assessing a student's physical capabilities — a CF student's "personal best" in athletics or recreation is often very different than that of a healthy child. Talking to the student and parents can help determine the appropriate physical activities. Try to include a child with CF in all games and activities in which they are physically able to participate.
When exercising or in hot weather, your camper may need to take salt supplements and drink extra fluids. Water or sports drinks should be easily accessible during physical activities.
Closing In On A Cure
The CF Foundation supports several promising new avenues of CF science that will lead to a cure. Currently, there are a number of new drugs undergoing clinical trials that are treating the causes of CF and not just the symptoms. Any one of these potential therapies could have a profound impact on the lives of people with CF.
By better understanding your student's illness, you can help others create an environment for the individual with CF to flourish. Education is one of the best defenses in our ongoing battle to cure this insidious disease.
Note from Lisa: This was modified from a document by the CF Foundation called "A Teacher's Guide to CF". Click here to see the original.

This website is the sole property of Lisa C. Greene, M.A., CFLE. Lisa is a certified parent coach, certified family life educator, public speaker, and a mom. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.” For more information,  visit visit www.PCWHI.com.  
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