Cystic Fibrosis-Related Arthritis: Who, What, Why, and How?As people with cystic fibrosis continue to live longer, healthier lives additional complications arise and require care alongside typical CF routines. One of those complications is cystic fibrosis-related arthritis (CFA). CFA... By Janeil Whitworth3 min readBookmark for laterReactions 0 reactions Comments0 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
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. Often, this demands that a parent is courtside... By Noreen Tarletsky4 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
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 positive development within the world of CF. But... By Editorial Team 3 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
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 I have experienced quite a lot of financial... By Cheriz K.5 min readBookmark for laterReactions 0 reactions Comments0 comments
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 came as somewhat of a shock to me... By Kynsie Riedel3 min readBookmark for laterReactions 0 reactions Comments0 comments
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. It brings me so much joy to see... By Megan Barlow3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 treatment didn’t work, and allow patients to be... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 and adults in the United States. While there... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 children, so depending on number, age, and interest... By Cheriz K.3 min readBookmark for laterReactions 0 reactions Comments0 comments