You have captured the essence of cystic fibrosis beautifully, particularly how it affects multiple body systems through thick secretions. Your point about infertility is especially important and deserves more attention in clinical practice. Women with CF face unique reproductive challenges that extend far beyond the physical barriers you mentioned. The European Respiratory Society and Thoracic Society of Australasia emphasize that women with CF are acutely aware of fertility difficulties, the necessity of genetic testing for their partners, and the profound impact pregnancy can have on their health 1. Many women report not pursuing pregnancy due to fears about passing CF to their children or concerns about their own health deteriorating to the point where they cannot care for a child 1.
The fertility conversation needs to happen early and repeatedly throughout a patient's life. The Cystic Fibrosis Foundation recommends that genetic counseling should be accessible to families, with discussions about reproductive decision making provided at regular intervals throughout the lifespan 1. This is not just about freezing eggs or sperm. It involves partner testing for CFTR mutations, understanding the 35% subfertility rate in women with CF compared to 5 to 15% in the general population, and recognizing that older age and pancreatic insufficiency worsen fertility outcomes 1. The length of time required for genetic testing and finding obstetric specialists experienced in CF management should be flagged with patients much earlier than it typically is 1.
Beyond fertility treatments, many women express that too much emphasis is placed on pregnancy itself and not enough on the realities of parenting with CF 1. The physical toll of caring for a newborn while managing thick secretions, frequent infections, and declining lung function is substantial. Women report wanting networking opportunities with other mothers living with CF to discuss practical parenting issues 1. This holistic approach to reproductive health, addressing not just conception but the entire journey of parenthood, represents the future of comprehensive CF care.