My name is Kelly Ann Quinlan and I am 19 years old. I was diagnosed with cystic fibrosis at birth. My 24-year-old brother Michael also has cystic fibrosis, which is a challenge, as we both live in the same home but must live separately to a degree. We are very close to our parents and sometimes they struggle with the extra duties and constant cleaning that comes with raising two CF children.Read More
Explaining CF to those around You
More and more CF patients are living to adulthood and having children. This can create a dilemma about shielding children from the parent’s CF condition.
Experts encourage parents to include children by discussing cystic fibrosis in age appropriate language and involving them in day-to-day activities. This inclusiveness tends to support the child, alleviate fears and prepare the child for situations e.g. a health crisis that may evolve. By including children in crisis situations, they will be guided toward accurate, healthy, and hopeful interpretation of the event and will learn adaptive coping skills.
The content of the discussion should be individualized/tempered according to the child’s age. For instance, preschooler’s may not understand direct words but are sensitive to a parent’s emotions and stresses. This age group may simply require reassurance. Once the child gets older, they may be curious and ask more about your condition. Don’t be afraid to answer their questions. Use this site to help explain cystic fibrosis and support them to spread the word by talking with their friends.
Cystic fibrosis affects the entire family, so it’s important to discuss openly with everyone. If you have any questions about this or other topics like this, your clinic social worker is a great resource.
For parents with children with cystic fibrosis, we have a resource available to provide educators with background information on the experiences of children and adolescents with cystic fibrosis.