Caring for someone with cystic fibrosis
Whether you’re a parent or a caregiver, looking after someone with a complex medical condition like cystic fibrosis (CF) can be challenging. Finding ways to cope with this life change is part of adjusting to a diagnosis of a loved one CF. We’re here to help where we can.
Do you care for a child or adolescent with CF?
If you're caring for a child with cystic fibrosis (CF), it’s important to remember you are not alone. Your CF care team is there to help and support you and answer any questions you may have. Cystic Fibrosis Canada works directly with care teams and our community to support families as well.
Treating a complex lifelong disease like cystic fibrosis means that different therapies are needed to address problems in different parts of the body. Your CF care team will provide you with an individualized treatment plan for your child to manage symptoms of CF.
As research continues, therapies continue to improve and people with CF are living longer. CF is a life-long disease, but many people with the disease go to college, get married and have families.
There is a lot you as parents and caregivers can do to keep your child as healthy as possible, including:
- Teaching your child about germs, hand-washing and chest therapy.
- Feeding your child a CF-friendly diet.
- Sharing information and resources about cystic fibrosis with your child’s daycare and school.
- Learning about CF medications to support your child and talking to your child about CF so they can understand the importance of treatment.
As a parent or caregiver, learning about cystic fibrosis and managing treatments for your child may make it easy to neglect your own health and well-being. Try to balance your health and find support, either from family or friends or from mental health professionals like counsellors and therapists. Connecting with other parents of children with CF or caregivers can also be helpful. Your CF care team is also a great source of advice and support.
Parent and caregiver resources
Parents and caregivers have a demanding role, but many sources of support and resources are available – through Cystic Fibrosis Canada and in your community.
To help get you started, we’ve compiled some helpful information in our Resources Hub that can help families who have loved ones with cystic fibrosis find support.
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Here to help - the CF Helpline
Cystic Fibrosis Canada has a Helpline to answer your non-urgent questions and help connect you with the community and government resources available to you. We do not give medical advice but we’re here and ready to chat about other aspects of living with cystic fibrosis during business hours Eastern Time at 1-800-378-2233 or you can email us at [email protected].
