parenting a child with cystic fibrosis
emotional health
and physical health are both important for families that live with cystic fibrosis (CF).
The below resources can help us learn to process stress and establish routines that support healthy, balanced lifestyles with CF.
coping tips and managing stress
Learning that your child has cystic fibrosis can be overwhelming, but it helps to know that you are not alone. The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. The CFF also offers a wealth of resources to help us care for our children while nurturing our own emotional well-being. Through parent videos, blogs, and downloadable tools, we can learn to recognize signs of stress and establish family routines that support a healthy and balanced life with CF.
counseling and caregiver support
Cystic Fibrosis Research, Inc. offers education, advocacy, and support programs to those with CF, as well as their families and caregivers. Examples include counseling sessions for people living with CF, their parents, siblings, spouses, and partners - and monthly caregiver support groups facilitated by a social worker who is well versed in issues facing CF caregivers.
couples, kids, and talking about cf
Lisa Greene founded Happy Heart Families after she became a mom and realized how much help she needed.
It's not easy being a parent, especially of a child with heightened health care needs. Many of us feel overwhelmed until we develop the tools and skills needed to begin dealing with this new way of life. One way that we can help reduce stress and increase confidence is to learn what does and doesn’t work in the way of communication, child discipline, and motivation. Greene’s articles, audio, and video clips give us practical tools, tips, and strategies for handling the unique issues many of our families face. Examples include:
Dealing with the emotions of CF
Stress management
Sibling issues
Couples relationships
Talking to your child about CF
Funny stories for CF parents
And much more!
living stronger and longer
The Cystic Fibrosis Lifestyle Foundation empowers people living with CF to live stronger and longer through healthy and active lifestyles. Founder Brian Callanan understands firsthand the physical, emotional, and financial challenges that can accompany a chronic illness.
The CFLF hosts a weekly blog that allows people living with CF and the friends and families who love them to share their stories. This is where I first started blogging about my journey!
The CFLF also offers up to $500 in Recreation Grants to help people living with CF better afford physical activities. Applications are due September 30, 2021.
living life to the fullest
Cystic fibrosis (CF) survivor Andy Lipman has defied all odds to become a college graduate, Olympic torchbearer, runner, husband, father, advocate, and author. He has written a new book, The CF Warrior Project: 65 Stories of Triumph against Cystic Fibrosis, celebrating people like him, who persevere and live life to the fullest every day even though they have a terminal, invisible disease. This book of hope focuses on 65 different warriors from all over the globe who have one thing in common – they each have cystic fibrosis. It features stories of people who defy the odds, take the cards they are dealt, and go far and beyond what was expected.
