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...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 positive development within the world of CF. But...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, icing sugar cookies, building gingerbread houses, and sipping...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 cystic fibrosis caregiver husband, Kyle. In our handwritten...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 our daily lives. He is undeniably soaking up...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 I have experienced quite a lot of financial...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 came as somewhat of a shock to me...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. It brings me so much joy to see...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 treatment didn’t work, and allow patients to be...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 and adults in the United States. While there...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 children, so depending on number, age, and interest...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 playing music for children to soothe and connect...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 as CF). Whether you’ve been diagnosed with CF...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 (CFTR). When the CFTR proteins do not form...reactionscomments
5 Questions to Ask Yourself Before Participating in a Clinical TrialMaking decisions can be tough, especially when they relate to your health! One decision you may face is whether or not participating in a clinical trial is right for you...reactionscomments
How Exercise Kept Me Out of the Hospital Until I Was 26I have always been active. Since I could remember, I’ve been involved in all different sports, by recommendation of my doctor from an early age. I wasn’t diagnosed with CF...reactionscomments
Review of the Philips Innospire Go NebulizerThe Philips Innospire Go portable mesh nebulizer has opened up a whole new world for me when it comes to doing my treatments on the go. With the Monarch Vest...reactions9comments
My Life with Cystic FibrosisMy name is Craig Konowal, and I was diagnosed with CF at birth. I was able to get an early diagnosis because I had an older sister who passed away...reactionscomments
PICC Lines and Ports for People With CFPeople with cystic fibrosis (CF) often need treatment with IV (intravenous) medications, most frequently antibiotics. Vascular access devices, including peripherally inserted central catheters (PICCs) and ports, permit ongoing access to...reactionscomments
Not Always a Placebo! Types of Clinical TrialsWhen many people think of clinical trials, they may think of testing a new experimental drug or taking a placebo pill. But, not all clinical trials involve treatment! Even among...reactionscomments
