Disability Visibility: The Super CF ChameleonMy favorite thing about having cystic fibrosis (CF) is that most often no one can actually tell that I have CF or rather, anything unique about me at all. I... By Mikayla Bianchin2 min readBookmark for laterReactions 0 reactions Comments0 comments
2023 CF Awareness Month: BFFsMay is Cystic Fibrosis Awareness Month, and we are celebrating BFFs (best fibrosis friends) in the cystic fibrosis (CF) community! All month long we will be highlighting ways to safely... By Cystic-Fibrosis.com Team1 min readBookmark for laterReactions 0 reactions Comments0 comments
BFF Distanced Dining GiveawayThe Distanced Dining Giveaway is now closed. Thank you for your interest! It's Cystic Fibrosis (CF) Awareness Month, and we are celebrating BFFs (best fibrosis friends). Since friends that... By Cystic-Fibrosis.com Team1 min readBookmark for laterReactions 0 reactions Comments3 comments
Why I Sobbed Registering My Son For KindergartenI do a lot of self-reflection humbly standing at my kitchen sink. Lost in the mundane task of dishwashing, I find it easy to process through my emotions–sloshing, scrubbing, and... By Janeil Whitworth3 min readBookmark for laterReactions 0 reactions Comments0 comments
How I Am Sleeping Through the Trikafta InsomniaSleeping has been a great difficulty since starting Trikafta. I am not alone, the Trikafta tribe are pretty much all in agreement on this one. Those peachy pills do not like... By Emma Boniface2 min readBookmark for laterReactions 0 reactions Comments0 comments
CF and Partner PTSDBeing a partner to someone who has cystic fibrosis (CF) can be hard. It can be exhausting, scary, and confusing. As someone with CF who has a partner, my husband... By Katelyn Harlow2 min readBookmark for laterReactions 0 reactions Comments0 comments
CF and VeganismAn essential part of staying healthy with CF is the diet. Often CF patients are told to include high-fat, high-calorie foods. In my experience, this was due to the probability... By Mikayla Bianchin4 min readBookmark for laterReactions 0 reactions Comments0 comments
Five Actions That Get in the Way of My AppetiteFor the first time, many people with CF have been able to focus less on gaining and maintaining weight and more on living life. Finally, they can eat a normal... By Janeil Whitworth2 min readBookmark for laterReactions 0 reactions Comments0 comments
Feelings of Survivor's GuiltI hear a lot about survivor's guilt as a cystic fibrosis (CF) patient. I’ve had moments in my life I feel it creeping up when others talk about struggles with... By Jennifer Oramas3 min readBookmark for laterReactions 0 reactions Comments0 comments
Family DynamicsFamilies have many dynamics. There is a dynamic between the parents and children. The children in a family have their own dynamic. And the parents have their own dynamic, too... By Katelyn Harlow3 min readBookmark for laterReactions 0 reactions Comments3 comments
Creating A CF Exercise Regime That FitsWe all hear the physios harp on about exercise but sometimes it can be daunting thinking about where to start. It took me many years and the breakthrough of modulator... By Emma Boniface3 min readBookmark for laterReactions 0 reactions Comments0 comments
What it Feels Like to Be in the Transitional GenerationA recent article in the New York Times Opinion written by Dr. Daniela J. Lamas, a pulmonologist in Boston, detailed the story of momentous change occurring in the cystic fibrosis... By Janeil Whitworth3 min readBookmark for laterReactions 0 reactions Comments0 comments
Understanding Non-apparent Disabilities in the WorkplaceAbout 1 in 4 American adults live with a disability. Many people living with a disability are able to work and do. For those with an invisible disability, the decision... By Editorial Team3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Many Colors of Cystic Fibrosis: Orange (Part 1)I love viewing my journey with cystic fibrosis (CF) through the lens of Joseph’s Technicolor Dreamcoat. If you’re unfamiliar with the biblical musical, just know that Joseph is gifted a... By Nicole Kohr2 min readBookmark for laterReactions 0 reactions Comments0 comments
What It Means To Be A CF WarriorSome of the fiercest people I know have CF. The strength, determination and sheer willpower to fight for another breath is formidable. To friends and family who don’t have the... By Emma Boniface3 min readBookmark for laterReactions 0 reactions Comments0 comments
New CF Medicine StrugglesGetting a new medication prescribed can feel overwhelming. I was prescribed a new medication a few years ago. And this medication had very specific requirements and instructions. One of the... By Katelyn Harlow3 min readBookmark for laterReactions 0 reactions Comments0 comments
Is CF A Secret?I have CF. For most of my life, that has been public knowledge. I shared it with people nonchalantly, as I would my favorite food. It was so normalized to... By Mikayla Bianchin5 min readBookmark for laterReactions 0 reactions Comments0 comments
CF Snacks My Five Year Old LovesI have yet to meet a parent whose child has a perfectly balanced and healthy diet 24/7. Sure, we would love that for our kids, but they also have minds... By Holly Williams4 min readBookmark for laterReactions 0 reactions Comments0 comments
My CF Exacerbation Complication: AtelectasisLiving with CF, I know pain–all kinds of different types, locations, and degrees of pain. Pain from lung infections and coughing, abdominal pain or “CF belly” pain, joint pain, and... By Janeil Whitworth2 min readBookmark for laterReactions 0 reactions Comments0 comments
My 25-Year Anniversary of CF DiagnosisThe 25th anniversary of my diagnosis. It crept up on me without my noticing. I was on a meeting a week or so ago discussing when we started showing symptoms... By Jennifer Oramas3 min readBookmark for laterReactions 0 reactions Comments0 comments