Living With Cystic Fibrosis, Youth
Cystic fibrosis (CF) is a disease that causes thick mucus to build up in your lungs and other parts of your body. This can make it hard to breathe and cause you to cough and wheeze. As a result, you may get sick more often and may need to stay in the hospital.
CF happens when you inherit the gene that causes it from one or both of your parents. Even though there is no cure for CF, there are treatments and things you can do to manage it.
HOW DO I TALK TO OTHERS ABOUT MY CONDITION?
It can be hard to explain to your friends what it is like to live with CF. They may have questions. They may not know how to react when you tell them that you have a serious illness. Here are some suggestions:
• Tell people
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• Explain that you sometimes cough and have trouble breathing.
• Explain that you need treatment every day to clear your airways and stay healthy.
• Explain that you may not be able to be around people when they are sick because it is very dangerous for you to get an infection.
You and your parents may meet with teachers and other staff at school to talk about CF and your needs during the school day.
WHAT ARE SOME WAYS I CAN COPE WITH STRESS?
Living with CF is stressful. Managing stress can help you manage CF. Too much stress can:
• Worsen problems with your lungs.
• Make you more susceptible to infection.
• Cause depression or anxiety.
To cope with stress:
• Get exercise each day. Work with your health care provider or physical therapist to find activities that are best for you. This may include:
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• Try to accept that you cannot control your CF perfectly.
• Breathe slowly and deeply.
• Stay positive about your health.
• Spend time outdoors.
• Spend time with friends and people who make you laugh.
• Avoid caffeine, drugs, and alcohol.
• Eat a nutritious, balanced diet and make sure you eat enough calories.
• Relax each day, through meditation, yoga, or listening to music.
WHAT ARE SOME WAYS I CAN COPE WITH MY EMOTIONS?
CF affects you emotionally. You may feel sad, worried, or even depressed. Cope with your feelings by:
• Talking with a counselor or therapist.
• Talking to friends who support and listen to you.
• Joining a support group for young people with CF.
• Writing about your feelings in a journal.
• Expressing yourself through art, crafting, or playing music.
• Spending time playing with a pet or therapy animal.
WHERE CAN I GET SUPPORT?
For support, turn to:
• Your parents, family, and friends.
• Your doctor, nurse, or other member of your health care team.
• A therapist.
• Your pastor, priest, rabbi, or imam, or other religious leader.
• Summer camps or retreats for kids with CF.
• A child life coordinator at your clinic or