Time Traveling With TrikaftaMuch like the entire cystic fibrosis community, I was eagerly awaiting my arrival of the recently approved CFTR modulator: Trikafta. Following the...reactions1comment
Tips for Overcoming DehydrationFor those of us with cystic fibrosis, our bodies put us through a lot every day because of those two mutated CFTR...reactionscomments
My Port Gives Me a Piece of FreedomThere are moments throughout my day living with cystic fibrosis that I sit back and watch my freedom slip away. Like water...reactionscomments
What Lifestyle Changes Has Cystic Fibrosis Caused?We asked our advocates, "What changes have you had to make to your life/lifestyle because of cystic fibrosis?" Here's what they wanted...reactionscomments
The Other 10 PercentWhen I learned about Trikafta, I was thrilled and moved to tears. It was a bittersweet moment for me. I was happy...reactionscomments
Winter WorriesBrrrrrr. It’s freezing outside. Whenever the winter season comes around, I think why in the world do I not live in a...reactions3comments
Having an Emergency Preparedness PlanHaving a plan in case of an emergency or natural disaster is important and a good idea for anyone, but especially those...reactionscomments
You Judged Me For My Invisible Illness and You Didn't Even Know ItThe other day, a small card was left on my windshield at a local shopping plaza. It read, “Hey idiot! You absolutely...reactionscomments
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
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
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
