Living With Cystic Fibrosis24 Marras 2025

Life with CF Without Phones, Electricity, or Transplants

What does it mean to live with cystic fibrosis (CF) in Amish and Mennonite communities, where many families don’t use phones, computers, or even electricity? For some, this means relying on handwritten letters for communication, trying herbal remedies before conventional medicine, and declining treatments like lung transplants or in vitro fertilization because of cultural and religious beliefs.

Update State CF Center (Syracuse, NY) Social Worker Lejla Bush, who has worked with the CF community for over a decade, shares how Amish and Mennonite families navigate CF while staying true to their traditions. She explains the unique challenges, from financial hurdles without health insurance, to hospital care that must adapt to cultural practices, and the vital role of community support in helping families face this disease.

Most importantly, Lejla reminds us that while the cultural context is different, Amish and Mennonite parents hold the same hopes, fears, and love for their children as any other family affected by CF.

This episode opens a window into the powerful intersection of culture, medicine, and resilience.

We did a Q and A with some people in the Amish and Mennonite communities. Thanks to Lejla for sharing so much information about the Amish and Mennonite communities.

To see a letter of Q and A with one of the Amish patients click here: https://thebonnellfoundation.org/wp-content/uploads/2025/09/AmishLetter.jpg

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