When your child is diagnosed with cystic fibrosis (CF) you may feel overwhelmed, anxious, or even angry. But it’s important to know that you are not alone.
There are so many available resources to help you understand more about CF, such as:
- 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 Inc. (CFRI): A nonprofit organization that funds CF research, provides educational and personal support, and spreads awareness of CF
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.
Your loved one’s daily life with CF
With major advancements in CF treatments in the past few decades, most people with CF incorporate treatment routines and techniques into their daily life.
To understand more about caring for a child with CF, check out these caregiver tips:
Talk about CF with friends and family
CF is a complicated disease. So it makes sense that people in your child’s life, including family and friends, will have questions.
Consider the following tips to help guide your discussions about CF:
- Explain what CF is: Many people won’t be familiar with CF, so don’t feel shy about educating them
- Find out their health status: It’s important for friends and family to know that when spending time with someone with CF, even minor illnesses, like a cold, can be a big deal
- Explain your child’s treatments: They may be able to lend a hand in the future if you’re comfortable with it