This is from the CF Foundation. Just copy and paste this into a word dcument and print it out for your teachers. Here's the link to the original web version: Teacher's Guide to CF.
Also, CFRI publishes a wonderful booklet called Cystic Fibrosis in the Classroom. Go to their website at www.CFRI.org and go to resources and then educational materials.
Teachers Guide to CF
The CF Foundation has prepared this fact sheet for teachers to answer questions about students with CF. In addition to reading the information provided here, talk with your student's parents or physician about the best ways to make the child or adolescent comfortable, to maximize his or her learning experience. As a teacher, you play an important role in developing and strengthening your student's self-image, which will further stimulate the creation of meaningful relationships with classmates.
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 student with CF in your class, he/she is in fair to moderate health but well enough to attend school, either on a full- or even part-time basis. On the other hand, there are some individuals who are so severely limited by the disease that they are unable to attend school regularly.
When the CF Foundation was founded in 1955, a child with CF was not expected to live much beyond the age of five. Today, dramatic advances in CF research and treatment have helped to extend the median age of survival for a person with CF to their early 30s. As a teacher, you may help by understanding any special requirements a child with CF may have to take into consideration planning for their future. This is not to say that a child with CF should be limited in scope — they should be encouraged to pursue their academic/career goals to the fullest.
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 teacher of a student 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 slip out of the classroom for a drink of water. In addition, many children have been taught to expectorate the mucus into a tissue. Encourage your student to keep a box of tissues and a means of disposal at his or her desk.
Paying undue attention to coughing will only embarrass the student. Classmates are likely to follow your lead as the teacher - if you accept the coughing as not that unusual - the rest of the class 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. You may want to suggest keeping the pills in your desk, or in the nurse's office.
Exercise may be 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 student 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.
CF gene therapy researchers are leading the way in the pioneering science of gene therapy technology. Researchers now know that this therapy is safe and that the normal gene "turns on" in CF cells. Scientists are focusing on developing the best gene delivery method for the healthy genes so that they will achieve longer gene expression.
In the battle to conquer this devastating illness, the cure for CF will most likely result from a combination of gene therapy technology, protein assist therapy (which attempts to correct the defective protein produced by the CF gene), and drug therapy.
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.