Treatments

Activists are pressing governments in low- and middle-income countries to open up access to generic, more affordable versions of Trikafta/Kaftrio. Vertex Pharmaceutical’s drug is recognized as a major breakthrough in treating cystic fibrosis, but due to patent monopoly and high costs, the treatment is still inaccessible to an estimated 88% …

Two sides of the (CF) coin – By Alison Smith Living with CF, for me there are almost 2 different worlds, before kaftrio and after kaftrio.   Before I was on this new drug my whole life has revolved primarily around my health, hospital life and medication, and the ripple effects from …

The Trauma of Disease Diagnosis Written by Aoife Rafter – Inspired by the work of Gabor Mate – The term ‘trauma’ is being thrown around so commonly these days, but what exactly is it and how does it affect us? What is Trauma Many of us experience some form of …

– by Sarah Leigh Milczanowski HOW IT ALL BEGAN It was back in October 2019 when I was given the incredible news I was eligible to try the then-named Trikafta, at the time I was in second stage respiratory failure using cpap and oxygen and very weak and exhausted. I …

– Written by Aoife P. R. Here Comes The Sun Although I love to see the sun shining and the rain hold off so we can get outdoors to jazz up the garden, hit the beach, go for a picnic, or head for a hike with the dogs, I’ve learned …

Where I’ve Been After several years of infertility, I was finally living my greatest dream of being called “mama” by two precious little girls. My days were filled with the beautiful, messy responsibilities of motherhood – breastfeeding, rocking tired babies back to sleep in the middle of the night, dancing …

Much like the terms used when noting a date, referencing “B.C.” (Before Christ) & “A.D.”(anno domini), I often divide my life as a person with Cystic Fibrosis, or CF, into two parts: pre-Trikafta & post-Trikafta. The first 36 or so years of my life were spent without the development of …

I was born in Washington, D.C. in 1985, and was raised in a nearby community known as Reston, Virginia. By the time I was born, my older sister had just recently passed away from Cystic Fibrosis at the all too innocent age of eight. To say that her passing was …

Trikafta truly is a life changing drug. My life has improved astronomically since starting Trikafta. I never would’ve thought this soon in my life I would have seen three pills a day take over all the treatments I used to do. Prior to Trikafta, I used to have to be …

The Beginning My name is Ron, I am 48 years old, and I was diagnosed at birth with cystic fibrosis.  I was born roughly one month premature and given up for adoption at birth.  As a result of my adoption being finalized in New Jersey in 1977, the records were …