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Our Relationships with Our Doctors Are Stronger When We Self-advocate

Doctors receive training in particular specialties and, in some cases, subspecialties. But “specialties” and “subspecialties” can be described as a “broad array of diseases” and “broad array of fewer diseases.” I’m not trying to dismiss the expertise of medical professionals or reduce them to their skill sets. I’d never…

Is There an Upper Limit to the Improvements That CFTR Modulators Can Provide?

The cystic fibrosis community has access to three cystic fibrosis transmembrane conductance regulator (CFTR) modulators right now: Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), and Symdeko (tezacaftor/ivacaftor). These CFTR modulators are each approved for specific mutations and age groups. If you’ve been following the progress in this area, you’ll be…

Do You Feel What I Feel?

I am going to explain what it’s like being in this body. But before you read this, you need to know it’s not because I have a “woe is me!” attitude or want condolences or pity. I am lucky to have this body. This body is lucky to have me.

I Am Not a Morning Person

I want to start this off with the disclaimer that I have never been a morning person. I am a night owl with a coffee addiction and a second-shift job. However, there is much more to the story. Several months ago, I noticed myself starting to frequently use the phrase…

The Long-term Effect of Disability Language

The life of a person with CF is constantly affected by language. A common debate in the community is how best to label us. Is it better to call someone a CFer or a person/adult/child with CF? To some, CFer means their life is singled down to one identifying characteristic,…

Accepting the Bumps in the Road

Life with cystic fibrosis (CF) has made me all too aware of the ticking clock. Having a natural tendency to be impatient, I’m a person who wants things done and over with now. Results have to be instant or they’re unsatisfactory. What I want…

Use Me for Something Good

I’m not sure what I’m here for, but I hope it’s something good. From the ages of 8 to 12, I thought I was designed for warfare. My father served in the military, and don’t we all aspire to do as our parents did?…