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– by Tina Clarke I want to talk about mental health and living with cystic fibrosis…or rather I should say I want to talk about our body and how “mental health” is a misnomer. I am currently 43 years old with CF and I received a double lung transplant over …

– Written by Aoife P. R. I was recently discharged from a 2-week stay in hospital. My chest got quite tight and my weight dropped significantly too, so I knew pretty quickly that 2 weeks of IV antibiotics were necessary. To be honest, I was feeling so lousy that 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 …

– Written by Aoife P. R. 28 and Menopausal Okay, so you’re probably wondering why I’m writing about this topic at such a young age. You’re probably thinking, “What could this young person possibly have to tell me about this latter in-life hormonal change?!” And that’s fair, I mean I …

– Written by Aoife P. R. My Experience with HPV + Cervical Cancer As some readers may know from my previous posts, I was diagnosed with Cervical Cancer at just 27 years of age. This was a total shock my family and I at the time, as having CF kind …

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 …