"I try to reassure everyone who has been affected by this disease that CF isn't the end of the world if you don't want it to be."
The experience of living with cystic fibrosis is markedly different today than it was decades ago. Thanks to the discovery of the CF gene, the availability of effective drug therapies and advances in technology, the 30,000 Americans who deal with the disease day in and day out are living longer and fuller lives. In a word, they are thriving.
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Podcast 104: Being a CF Parent and Caregiver

Megan Mollahan is a parent and caregiver to her two children with cystic fibrosis. Her daughter, Maureen, is 20 years old (diagnosed at age 8), and her son, Jack, is 10 (diagnosed at two months). The family lives in New York.

Megan discusses what it’s like to wear “many different hats” as parent, caregiver, friend, advocate, etc.

  • When her daughter was initially diagnosed, Megan leaned on her faith, family, friends and doctors for support.
  • Megan’s initial focus for her children with CF was “being diligent to treatments to keep them healthy and keeping a positive attitude.”
  • “I try to stay pro-active in the CF community with CF Walks, school projects, and fundraising support from local businesses,” Megan says. She even uses Skype to help her son communicate with teachers when he is sick at home.
  • “Everything I do for my children with CF is times two… so I try and simplify and make them independent with all treatments and medications. This becomes a juggling act at times but is well worth the effort,” Megan says.
  • Megan’s advice to other parents/caregivers: “Be patient, open a dialogue and communicate, have a support team, and it’s ok to take a day off.”

This “LIVI NG. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

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