CF Diet ManagementWe asked our advocates, "What practices have you applied to CF diet management?" Here's what we heard! Response from Cheriz K I focus on gaining weight by making sure I... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Not So MotherhoodOver the course of my life, I’ve noticed changes to myself that - frankly - I’ve ignored. These are changes due to my cystic fibrosis that I chose to place... By Marieliz Landa2 min readBookmark for laterReactions 0 reactions Comments0 comments
Connecting With CF PeersWe asked our advocates, "What methods do you use to connect with your CF peers? How do you feel about these methods?" Here's what they wanted to share with you... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 published research, community hype and amazing progress stories... By Janeil Whitworth3 min readBookmark for laterReactions 0 reactions Comments1 comments
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 genes. Why is it that something that seems... By Megan Barlow3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 running through my fingers, there’s no stopping the... By Janeil Whitworth4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 to share with you. Response from Cheriz K... By Editorial Team 5 min readBookmark for laterReactions 0 reactions Comments0 comments
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 beyond belief for the CF community. I was... By Marieliz Landa2 min readBookmark for laterReactions 0 reactions Comments0 comments
Winter WorriesBrrrrrr. It’s freezing outside. Whenever the winter season comes around, I think why in the world do I not live in a warmer climate? I don’t like the cold and it... By Cheriz K.3 min readBookmark for laterReactions 0 reactions Comments3 comments
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 with chronic health conditions, including CF. If you... By Editorial Team 5 min readBookmark for laterReactions 0 reactions Comments0 comments
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 suck at parking! Learn how to drive you... By Janeil Whitworth3 min readBookmark for laterReactions 0 reactions Comments0 comments
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. CF very much affects the lungs, with lung... By Cheriz K.5 min readBookmark for laterReactions 0 reactions Comments0 comments
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 of it is that I don’t want to... By Kynsie Riedel4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 understanding of cystic fibrosis. We discussed our family’s... By Janeil Whitworth4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 comes to a close and a new year... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 tiny and cute.” These are all things said... By Cheriz K.5 min readBookmark for laterReactions 0 reactions Comments0 comments
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 for my first week so that I could... By Kynsie Riedel3 min readBookmark for laterReactions 0 reactions Comments0 comments
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, icing sugar cookies, building gingerbread houses, and sipping... By Kynsie Riedel4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 cystic fibrosis caregiver husband, Kyle. In our handwritten... By Lauren Weeks4 min readBookmark for laterReactions 0 reactions Comments1 comments
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 our daily lives. He is undeniably soaking up... By Janeil Whitworth4 min readBookmark for laterReactions 0 reactions Comments0 comments