Has Your Loved One Recently
Received a CF Diagnosis?
Learning your loved one has cystic fibrosis (CF) can be a life-changing moment. Whatever feelings that might surface for you at this time are valid. There’s a lot of information to process if you’ve never heard of CF before. But you are part of the CF community now, so remember that you are never alone in this.
“There are going to be so many people that are around you during this journey and during this diagnosis, but they haven't been there. They don't know how to help. And so sometimes that just means we have to tell them.”
–Magen, mom of twins with CF
Getting familiarized with CF
Your loved one’s care team will likely give you a lot of learning materials to prepare you for the road ahead. Don’t be afraid to ask them questions! They are always the best resource to go to about your loved one’s specific health needs.
There are also some great online resources to help guide you in your journey. Here are a few places to start:
The Cystic Fibrosis Foundation: A nonprofit foundation that funds research in drug development, while educating and supporting the CF community.
Boomer Esiason Foundation: A nonprofit organization that partners with medical and business communities in an effort to find a cure for CF.
Cystic Fibrosis Research Institute (CFRI): A nonprofit organization that funds CF research, provides educational and personal support, and spreads awareness about CF.
Connect with the community
The CF community is a close-knit one, and there are many opportunities to seek out support from other caregivers in online forums and on social media.
You can also hear from other caregivers on the Uncommon
How will daily life look different for your loved one?
Getting in the groove of a CF routine may take some trial and error, but with major advancements in the past few decades, most people are able to incorporate CF treatments into their daily lives. Along with a solid treatment regimen, unique aspects of CF care might include:
- Understanding CF nutrition: Check out our guide to nutrition through different ages and life stages
- Avoiding germs: You and your child may need to work a little extra hard to stay clean and avoid germs. This may include frequent and thorough hand-washing, avoiding others while they’re sick, wearing a mask in public (as necessary), and not sharing food or drinks with others
- Planning family travel: From packing medication and high-calorie snacks to bringing a doctor’s note when flying internationally, traveling with a child who has CF requires some extra planning and prep
- Navigating insurance: Get an overview in our insurance guide
Talk about CF with friends and family
CF does not define your loved one. How you choose to talk about their CF with friends and family is up to you, but if questions arise, consider the following to guide your conversation.
CF is a complicated disease. So it makes sense that people in your child’s life, including family and friends, will have questions about it. Feel empowered to share your knowledge with them, but don’t feel like you have to share everything you know at once! Remember, there are plenty of online resources you can direct them to so they can do research at their own pace.
Giving an overview of your child’s treatment routine and other considerations like their diet and susceptibility to illness provides important insight for the people in your life. From there, it may be easier to ask friends and family whether they are experiencing any health issues before visiting, or to ask if they can incorporate some CF-friendly dishes at your next family gathering.
The better informed your support system is, the easier it is to ask for help (or accept help) when you need it. So share what you want to get the support you need, and keep things written down so you don’t have to repeat information about your child’s care too often.
For more tips on talking to others about CF, check out this guide.