Adult with CF
Longer and better lives
Thanks to advancements in interdisciplinary treatment and new cause-correcting medications, today’s adults with cystic fibrosis are living longer and healthier lives than previous generations. Life unfolds in phases for most people, and this is true for those with cystic fibrosis as well.
Sometimes the disease may take a significant toll, while at other times, its impact may be less pronounced. Adults with cystic fibrosis aim to be active members of society, but at times, the demanding nature of their treatment can create challenges in achieving this goal.
Balancing treatment and daily life
Managing one's health, time-consuming treatments, and interactions with the healthcare system can make adult life hectic. Effective organization and planning are crucial. Finding a balance between health, work, family life, and leisure can significantly impact disease progression. The severity of the condition affects both quality of life and work ability, with considerable variation among individuals.
Planning for children
Thorough planning is essential if you wish to have children while managing cystic fibrosis. Women with cystic fibrosis who want to become pregnant should involve a CF specialist about a year before attempting conception. Adequate prenatal care is important to ensure the health of both mother and baby. Men with cystic fibrosis are often sterile but can become fathers through assisted reproductive techniques. In this process, sperm is extracted from the testes through a minor procedure and used to fertilize the woman’s egg. State support for assisted reproduction is available, with a co-payment of approximately 1500 NOK per attempt and up to 15,000 NOK in total. Both men and women must undergo genetic counseling. Anyone with cystic fibrosis considering parenthood should consult their CF doctor.
Maintaining a healthy work life
For some, cystic fibrosis may reduce work capacity both daily and professionally. Flexibility in the workday becomes important, which may involve options such as working from home, taking additional breaks, or transitioning to a different job. Some individuals may need to reduce their working hours, while others might have to leave the workforce entirely. These can be challenging decisions that require careful consideration from both the individual and their environment.
Increasing challenges with age
As individuals with cystic fibrosis age, they may experience more pronounced symptoms and an increased treatment burden. Aging can bring about additional CF-related conditions such as CF-related diabetes (CFRD) and joint or bone pain, as well as issues like antibiotic resistance. In some cases, transplantation might become necessary. Adults with cystic fibrosis may find that their condition becomes more complex and involves managing multiple diseases and treatments. This complexity varies depending on factors like access to cause-correcting medications, the specific CF gene mutation, and disease progression.
Quality of life at your functional level
Cystic fibrosis (CF) is a progressive disease, and today’s adults were born at a time when CF care was not as advanced as it is now. As a result, many of those who are now adults may have a more developed form of the disease compared to those diagnosed today. However, there is significant variation in both cases. The goal is to create a meaningful life at whatever functional level one has at any given time. With continually improving care and medication, people with CF have great potential to lead fulfilling lives. Many adults with CF become parents, and some even become grandparents. Children born with CF today have even better prospects than the adults living with CF. Thanks to solid self-care and effective medications, life with CF today is vastly different from what it was just a few decades ago.
Know your rights
Det er viktig å ha en hverdag som gir rom for egenbehandling, utvikling og livskvalitet. Det finnes ulike rettigheter knyttet til arbeidslivet, som sykepenger og pensjoner. Det er avgjørende å kjenne til disse rettighetene i god tid før man trenger dem. Derfor er det viktig å sette seg inn i disse rettighetene når man starter utdanning og arbeidsliv, også om man tror at man ikke kommer til å trenge dem.
Talk to someone about adult life with CF
We have a private and confidential Facebook group for adults with CF. Here, you can ask questions, express frustrations, and find support, community, and humor. The group is called "Voksen med CF" and is part of our peer support service. You can also reach out to one of our adult peer supporters with CF for more personalized assistance.
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