More Than My Lungs: CF Affects My Whole BodyWhen people hear me say that I have cystic fibrosis they usually say “oh that’s a lung disease, right?” Which is true...reactionscomments
Experiencing Chronic Pain Due To Cystic FibrosisWhile waiting to begin Trikafta, my heart has felt a little heavy, mainly for reasons that I can’t explain. I think part...reactionscomments
Talking To My Young Child About CF (Part 2)In Part 1 of this series, I shared some practical tips to help my young child begin to process his experience and...reactionscomments
I Am More Than My Diagnosis: A Year in ReviewAs this community and our sister communities grow, one universal truth is clear: people are more than just their diagnoses. As 2019...reactionscomments
Tiny and Cute: Cystic Fibrosis Impacts My Body Image“I wish I could eat like you.” “You’re so pretty and thin.” “Everything looks good on your skinny frame.” “You are so...reactionscomments
Managing a Hospital Stay as a CF CaregiverCystic fibrosis, in most instances, requires frequent hospital stays for everything from a “tune-up” to a full-blown lung exacerbation and much more...reactionscomments
My First Week on TrikaftaI started Trikafta on November, 26th 2019: the week of Thanksgiving. I kept a detailed log of how I felt each day...reactionscomments
Colorectal Cancer and Cystic FibrosisAdvances in the understanding and treatment of cystic fibrosis (CF) have led to longer life expectancies than ever before. This is a...reactionscomments
How to Encourage Your Child with CF to EatWith the holidays quickly approaching, I reminded of some of my favorite seasonal traditions: Making pie crust from my great grandmother’s recipe...reactionscomments
An Interview With My CF Caregiver HusbandOn August 25th, 2017, I walked down the aisle at the top of a mountain to commit to a lifetime with my...reactions1comment
Talking To My Young Child About CF (Part 1)Even at the young age of two, I can sense my son is beginning to understand the role cystic fibrosis plays in...reactionscomments
Resources for Financial Support for Cystic Fibrosis PatientsCystic fibrosis costs a lot, it adds up between the medication, hospitalizations, surgeries, and time off work. I know my family and...reactionscomments
Waiting for TrikaftaIt’s been several weeks since the FDA announced the approval of Trikafta for use in 90% of cystic fibrosis patients. This news...reactionscomments
The Season of Giving Back – #GivingTuesdayAs we enter into the holiday season, and as I’ve gotten older, I’ve realized this time is more about giving than receiving...reactionscomments
Will I Need to Pay to Be in a Clinical Trial?Clinical trials can provide an opportunity for patients to receive the latest treatment, provide a new treatment option for those whose previous...reactionscomments
The Reality Of Cystic Fibrosis: The Inaugural In America Survey FindingsAnyone affected by cystic fibrosis (CF) understands how challenging it can be. CF is a lifelong, genetic disease that affects 30,000 children...reactionscomments
Family Activities with CF Involve More PlanningEvery year before winter hits, we like to enjoy the outdoors and go out with a BANG! My husband and I foster...reactionscomments
Musical Chest PT for CF, or How I Bond with My SonAlthough not by design, music – singing, really – has played a big role in my relationship with my children. Singing or...reactions1comment
Frequently Asked Questions (FAQs) About Cystic FibrosisThe Cystic Fibrosis Foundation estimates that more than 30,000 children and adults in the United States have cystic fibrosis (commonly referred to...reactions2comments
Types of CFTR Modulators: Correctors, Potentiators, and AmplifiersCystic fibrosis (CF) is a disease caused by genetic mutations (changes) in a specific gene called the cystic fibrosis transmembrane conductor regulator...reactionscomments
