Laura Lee Joiner

I have a deep sense of survivor’s guilt just because I am now 48, just getting diagnosed, and as a person with CF who was born in the 1970s only have a life expectance of age 14.  I feel guilty because not only should I not be alive, I have even been sick enough to be diagnosed until now.  I know it’s silly and I am grateful for the life I have h…[Read more]

I hII

I’m in the US and truly just consented to everything CFF registry, Trikafta etc at my clinic visit last Wednesday. So far, my insurance has covered everything and open enrollment is coming soon so planning to bump up my coverage.

I’m optimistic that the Trikafta will be covered but shudder to think about what the copay might look like.

My hus…[Read more]

My story is pretty similar to some above. I was just officially diagnosed about a month ago at the age of 48. I had COVID in early January and while I never got particularly sick, I had lingering respiratory issues … horrendous cough with shortness of breath as well as laryngitis.

I work in healthcare and after about three weeks of this g…[Read more]