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Cystic Fibrosis For One Day

March 29, 2015 By Susannah Fox Leave a Comment

Cystic Fibrosis For One Day

Boy wearing nebulizer mask and his momI shadowed a mom and her 5-year-old with CF from afar for 24 hours.

It taught me more than I could have imagined about living with a life-shortening disease — and about myself.

This “empathy exercise” was organized by Smart Patients, an online community where patients and caregivers learn from each other.

My post on Medium displays a sample of the text messages we exchanged (shared with Erin Moore’s permission). Here’s just two of the 20 included in this, the first of what I hope is a series of posts:

Text messages

Text messages about cystic fibrosisIt was a laborious process to capture each segment of our exchange and I’m afraid to put all 80 images on this site for fear of crashing it, so please check it out on Medium and let me know what you think.

Filed Under: e-patient stories, key people Tagged With: cystic fibrosis, empathy, Smart Patients

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