Articles

For 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...

I 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...

Families 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...

We 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...

A 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...

About 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...

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...

Some 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...

Getting 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...

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...

I 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...

Living 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...

The 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...

Painsomnia became more of an issue for me in my twenties when I felt it was a symptom often overlooked by CF doctors. I explicitly remember telling a ward physician...

I had cystic fibrosis (CF) exacerbations every other month for many years. The routine was pretty much the same. My doctors would tell me to call them if I felt...

Five years ago, when my daughter Caroline was two weeks old, she was diagnosed with cystic fibrosis (CF). Initially, we kept her diagnosis private, only telling close family members. This...

Receiving the gift of Trikafta didn’t feel like a cure, it felt more along the lines of a promise. It felt like it promised me a life back that I...

In late March 2020, I discovered two pieces of bad news. The initial transfer did not result in a pregnancy. I felt extremely disappointed and frustrated. There was so much happening...

Mornings are usually the most hectic time in our household. On top of getting ourselves up and ready for work, we also help the girls get dressed, fed, washed up...

Cystic fibrosis (CF) is caused by a defective protein. This protein affects how salt and water move in and out of cells. This leads to thickened mucus throughout the body...