Family Planning
With new treatments and improved health, more people with CF are reaching adulthood and beginning to think seriously about starting families. For many, this brings a mix of excitement, hope, and big questions around fertility, energy, and what parenting might look like. More women with CF are now conceiving as a result of modulator therapies, and more people are exploring family-building options than ever before.
Things you might be thinking about:
- “Can I have children?”
- “Will my health affect how I parent?”
- “How do I talk to a partner or family about this?”
CF can influence parenthood in many ways, from fertility and energy levels to the emotional weight of balancing health needs and caring for someone else.
I never thought I’d be married. I never thought I’d have kids.
– Adult with CF
Fertility
CF can affect fertility differently for men and women with CF, and while experiences vary, the landscape is changing. In the past, many people assumed fertility and parenthood would be out of reach, but modulator therapies have led to a rise in spontaneous and sometimes unplanned pregnancies, with generally reassuring maternal and infant outcomes (see story here).
It’s also helpful to be aware that carrier screening has some limitations, and CF carrier-screening tests may not detect all CF-causing variants, particularly in people of non-European backgrounds. Because of this, speaking with a genetic counsellor can be a valuable part of family planning, helping people understand their options and results more fully.
These changes can bring both relief and uncertainty. For some, it opens the door to new possibilities and conversations about starting a family. For others, it can raise difficult questions about fertility testing, assisted reproductive technology, or whether parenthood feels right for them.
For more general information on fertility, click here and for community stories on fertility click here.
Parenting with CF
With improved treatments, more adults with CF are not just thinking about having children, they’re doing it. While this brings joy and pride, it can also bring new challenges around energy, infection control, treatment routines, and managing time for self-care.
Parenting with CF can be both challenging and empowering. Research shows many parents describe it as one of the most demanding yet rewarding experiences of their lives.
My parents, they got to see grandkids come from me, which they actually never thought would be possible.
– Adult with CF
Parenting is always demanding and doing so while managing CF adds unique challenges. Many parents with CF say it’s both one of the hardest and most rewarding things they’ve ever done. Hearing from others who have walked this path can be helpful and reassuring. Lived experience stories or community groups can provide both comfort and practical tips, reminding you that you’re not alone and that there are many ways to build a family. You can find some community stories here.
I think it’s very valuable sharing stories, because sometimes CF can be very isolating because it’s so individualistic.
– Adult with CF
Tip: Reassuring yourself that being a “good parent” doesn’t mean doing everything perfectly, it means being present and loving in the way that works for you. Your experience with CF can actually bring powerful parenting skills, like empathy, resilience, and problem-solving.