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Top tips for talking to friends and family about CF

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Talking to friends and family about your child’s CF can be challenging. It can be hard to explain the condition and how it’s impacting your family while fielding questions from well-meaning loved ones. But talking openly about CF can be really helpful. Sharing insights into the condition can help those around you understand why the treatments and medicines are so important, why your baby needs extra care, and how they can support you as you adjust to the diagnosis.

There’s no right or wrong way to talk to people about your baby’s CF. It’s up to you how much you share, and when. We’ve put together some helpful tips to support you with getting conversations started.

Top tips for talking about CF 

Be prepared 

Before you start a conversation about CF, jot down what you’d like to say. You could even plan what you’d like to talk about in advance with your CF team. This can help you feel in control of the conversation. 

Tell people how they can help 

Loved ones often want to help, so let them know what you need – whether that’s practical support or a distraction from CF. 

Be ready for different reactions 

Some people might ask lots of questions, while others might not. And some questions might come across as annoying, or hurtful. It’s ok to decline to answer a question or redirect the conversation.

Be prepared for questions about genetics 

A CF diagnosis can surprise families who didn’t know they were gene carriers. Your relatives might have questions about what this means for them. Anyone with a family member who has CF or carries the gene can access testing on the NHS via their GP or your CF team. 

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Other places to get support 

CF teams often include psychologists or social workers, who can help you plan conversations or even speak to your loved ones on your behalf. You can also direct friends and family to our website, or to our Helpline. 

Our online community forum is a great place for you to chat with other parents and people with CF, and our parent peer support service, CF Connect, will put you in touch with a trained parent volunteer who you can talk to in confidence about having a child with CF.

Shanique holding baby Thiago, who has CF

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Our friendly Helpline team are here if you need us – whether you're looking for information, support or just someone to talk to. 

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Talking Toolkit: Tips to help you kickstart conversations about CF

We know that talking about cystic fibrosis and how it impacts your everyday life can be tough. Whether you’re opening up to a friend, explaining CF to a family member, or describing your experiences to your work colleagues, finding the right words isn’t always easy. As part of our CF Truths campaign, we’ve created a Talking Toolkit with some tips, blogs and resources to help you start conversations about your CF, and help people around you understand.