Teenager with cystic fibrosis
Living with cystic fibrosis (CF) can be particularly challenging during your teenage years. You may want to live as normally as possible and join in activities with your friends, but you might be unsure about the precautions you need to take. You might also feel isolated, as if others don't understand what you're going through. Or perhaps you simply want to learn more about CF and what's happening in your body.
This section provides answers to these questions and more, helping you better understand and manage your condition in daily life.
Advice from Teens to Teens
Even with CF, it's natural to want to live as normally as possible and participate in the same activities as your friends. However, taking a few precautions can be beneficial. The Youth Council of the Norwegian Cystic Fibrosis Association (NFCF) has compiled some tips and advice specifically for you:
Alcohol
While excessive alcohol consumption is harmful for everyone, having cystic fibrosis (CF) doesn’t mean you can’t enjoy a glass of wine or beer with your meal or attend social events with friends. However, it's important to consider how alcohol might impact your liver or interact with your medications. Since effects can vary from person to person, it's crucial to discuss your alcohol use with your doctor. They can help you determine what’s best for you.
Puberty
Puberty may be delayed in teens with CF. If this occurs, it often involves the following changes, though the timing can vary from person to person. Discussing these issues with your doctor can be helpful:
For Girls:
- Breast development and menstruation may start later.
- Menstrual cycles might be irregular in the beginning.
For Boys:
- Growth spurts may be delayed.
- Increased body hair and a deeper voice may develop later.
Being aware of these potential delays can help you better manage the challenges associated with CF and puberty.
Talking to Your Doctor
Doctors are required to keep your information confidential, which means they cannot share details about you without your or your parents' consent. Once you turn 12, you can ask to speak with your doctor privately, without your parents present. This gives you the opportunity to ask sensitive questions about issues such as bullying, romantic relationships, or sexual health. Your doctor should respect your request for privacy.
The only exception is if there is something very serious or dangerous; in such cases, you will be informed that your parents need to be involved. Remember, no question or concern is too minor. The most important thing is to feel safe and heard, no matter what you want to discuss with your doctor.
Smoking and Snus
Smoking is strongly discouraged as it can cause significant harm to your lungs, especially when they are already affected by cystic fibrosis (CF). Passive smoking is also detrimental, so it’s important to ask others to refrain from smoking around you. Snus is a health risk, and while its specific effects on those with CF are not fully known, it's best to avoid it altogether.
Sexuality and Fertility
Men with CF are typically sterile because the vas deferens, which carries sperm, does not reach the penis. However, it’s still important to use contraception since there are exceptions. Women with CF generally do not face major difficulties becoming pregnant, but antibiotics can reduce the effectiveness of birth control pills. Therefore, it’s crucial to inform your doctor or gynecologist about your CF to ensure you receive the right type of contraceptive. Condoms are the safest option, especially when used in combination with birth control pills, as they also protect against sexually transmitted infections.
Teen pregnancies are generally not advisable for anyone, particularly for women with CF. When you decide to have children, thorough planning is essential for both partners. Men will require assistance with fertility treatments due to the defective vas deferens, while women need to ensure their health can handle the demands of pregnancy. It's recommended to start planning at least a year before trying to conceive.
By following these guidelines, you can protect your health and the health of any future children.
Your Health Rights
Your health rights evolve with age, providing increasing opportunities for independence and responsibility regarding your health and treatment until you turn 18. Once you turn 18, you will be legally considered an adult.
Between the ages of 12 and 16, you have the right to voice your opinions, which should be considered in your treatment plan. However, your parents remain responsible for your care and medications, and they are entitled to information from healthcare professionals about your health.
At 16, you gain legal authority to make decisions about your own health and determine what information your parents receive regarding your healthcare. From ages 16 to 18, your parents still have the right to information to help them support your needs, but this is managed by healthcare professionals in consultation with you.
For more information on health rights, visit helsenorge.no and the "Children and Young People's Health" section on the Children’s Ombudsman website.
Hvorfor tror du ikke at jeg har en sykdom?
Cystic fibrosis (CF) is a condition that isn’t always visible, which can make it challenging for those around you to fully grasp how serious it is. One of the most prominent symptoms of CF is persistent coughing. Due to the mucus in the lungs, people with CF often cough much more than those without the condition. Some days, the coughing is severe, while on other days, it may be less intense. For some, the constant coughing can be extremely tiring and debilitating. One day you might feel completely fine, while the next day you might be feeling very unwell and unable to do anything. This fluctuation can be hard for others to understand, making it difficult for them to see just how much your condition can vary from day to day and how sick you might feel.
For those with CF who have fewer or milder symptoms, the illness might seem less credible to others. It can be helpful to have someone to talk to who understands what you’re going through.
Even if you’re taking medications that help control the underlying causes of CF and experience fewer symptoms, you still have the disease, and it will affect you to varying degrees. Many people with CF struggle with the challenge of having an illness that isn't outwardly apparent and sometimes find it difficult to be believed when they mention feeling tired, in pain, needing more time, or requiring sick leave.
It’s important to communicate openly with those around you about how you’re feeling and seek support from others who understand the disease. This can help you manage the challenges that come with CF.
Connect with other young people with CF
Likepersoner
Likepersoner are individuals with personal experience of living with cystic fibrosis (CF), either as patients themselves or as family members. The peer support network includes young people who have CF. Feel free to reach out to them or any other likepersoner if you have questions or need someone to talk to. Remember, all likepersoner are bound by confidentiality!
Youth council
The Norwegian Cystic Fibrosis Association (NFCF) has its own Youth Council. This council is dedicated to organizing engaging and fun activities for young people at weekend courses and other NFCF events. The aim is to create enjoyable experiences and foster connections among young people with CF. Please contact us with any suggestions, comments, or questions!
Events
Every year, we host social weekends and annual meetings in each region. In April, NFCF members from across the country gather for a national learning day, which includes the annual meeting and special activities for youth. We also offer other events you can participate in. Stay updated on upcoming events by checking the calendar or signing up for our newsletter.
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