Living

In addition to all the milestones one faces with their child, the treatment and management of cystic fibrosis includes pivotal moments for patients. While they may not be the traditional...

There are so many wonderful (and gag-worthy) smells we experience in our day-to-day lives. Freshly baked cookies, a bouquet of roses, sunscreen on the beach, or a newly cut Christmas...

Increased lung function? Check! Healthy weight gain? Check! Painful, cystic acne? Um...check! Improvements in the CF community since the release of Trikafta have been astonishing. People are living healthier lives...

Living with cystic fibrosis is living with a disease no one will really realize you have unless they know the details of your day-to-day life. Cystic fibrosis is an invisible...

When we have a gut flare-up, many dieticians feel our digestive enzymes are the culprit. Adjustment to quantities, missed doses, inadequate amounts, and so on. I found it extremely challenging...

Anyone who has had a kidney stone can tell you that it was one of the most painful events of their life. Nephrolithiasis is the process of forming a kidney...

The hardest thing about having CF is the invisibility. We look like the picture of health – like we should be full to the brim with endless energy. It is...

Cystic fibrosis care is overwhelming, monotonous, and exhausting most of the time. Often taking care of myself feels like a vicious, neverending cycle of the same routine over and over...

Struggling with weight gain throughout my lifetime has required daily attention to making sure I am consuming enough calories just to maintain my weight. For many years, really ever since...

Applying for Social Security Disability can be a daunting and overwhelming process for adults living with cystic fibrosis (CF) who are unable to work because of their health status. If...

It is no surprise that disparities in health care access have been present since the establishment of a health system. While these disparities are recognized, many reports continue to highlight...

A living will is known by several other names, including advanced directive, healthcare declaration, medical directive, and many more. There is often confusion about what these words mean and why...

Not too long ago, during one of my regular face time calls with my mom, I was explaining to her how frustrated I was with the setbacks that living with...

Around two-thirds of people living with CF are diagnosed before the age of 2. However, that’s not how my CF diagnosis story plays out at all. My diagnosis story is...

It seems that many people with CF know someone who hasn't learned the rule: “If you cannot say anything nice, do not say anything at all.” Some people feel free...

Sometimes, it feels like we are surrounded by technology. Apps, devices, trackers, and gadgets are everywhere! In this digital age, though, everyone has a different level of comfort using technology...

The year 2020 taught us a lot about ourselves and overcoming adversaries. After the onset of COVID-19, many non-disabled people were faced with unique challenges they have never experienced before...

Home infusions (IVs) are something most of us with cystic fibrosis are accustomed to. It’s one of the best ways to receive IVs without having to do an entire 2-week...

When people without cystic fibrosis (CF) think of CF, they likely focus on the hallmark characteristic of the condition: mucus. It is known that CF mucus is thick and sticky...

A good relationship with your doctor is essential when living with cystic fibrosis. CF patients often report feeling dismissed when talking to their doctors. On a recent social media Q&A...