A day with a cystic fibrosis patient

In my first quarter of medical school, I learned about prenatal screening for cystic fibrosis (CF), a progressive multisystem disease caused by an autosomal recessive mutation in the CF transmembrane regulator gene. We also learned about bronchiectasis, a common pathology of CF that consists of the irreversible enlargement of airways, promoting continuous low-grade bacterial infection and causing deadly respiratory failure. But despite my hours of studying and memorization, these clinical facts and scientific findings did not prepare me for the #CF1day experience to learn about the daily challenges of life as a CF patient. This is part of the #1day program from Smart Patients. CF1day is a program through which you are paired with a cystic fibrosis patient for an entire day via text message, email, and video, learning about their disease management, treatment, and the way their illness impacts their daily life. During my CF1day experience, I was fortunate to be connected to Emily, a cystic fibrosis patient and a strong advocate for other cystic fibrosis patients through her organization, Emily’s Entourage. The text message from Emily read, “Morning Paula — just waking up, and the first thing I do is test my blood sugar.” I had received my nebulizer (a drug delivery device to administer inhaled medications) in the mail to do treatments alongside Emily. But despite my previous training as an engineer, I was unsure even how to set up the device properly! Continue r...
Source: Kevin, M.D. - Medical Weblog - Category: Journals (General) Authors: Tags: Conditions Genetics Source Type: blogs