Sunday, September 11, 2011

Joan (50) Life with Cystic Fibrosis

Statistics about life expectancy in cystic fibrosis (which are generally listed as being in the 30s) are a mathematical average - usually the median average rather than the "most common" age. Statistics such as these were never designed to predict the length of life for an individual person with CF. Instead they show trends in cystic fibrosis - and these trends show life expectancy is improving due to research into new treatments, for example.

One such person who shows statistics are just mathematical calculations is sports enthusiast and CF Foundation volunteer, Joan Finnegan Brooks (50). In this video Joan talks about life as a CF adult and growing up with cystic fibrosis.



Cystic Fibrosis Resources

Sunday, September 4, 2011

What is Cystic Fibrosis? The "Grey Zone"

This is a very short video (with Pediatric Pulmonologist - Alfin G. Vicencio, MD) about the cystic fibrosis "grey zone" and how this complicates CF diagnosis. The "grey zone" relates to patients who do not present with the typical symptoms of cystic fibrosis but still have illness creating mutations on their cystic fibrosis transmembrane conductance regulator (i.e. the cystic fibrosis gene - also called the CFTR gene). This leads to atypical forms of cystic fibrosis and extends the boundaries of what "cystic fibrosis" is and how it affects people.



Cystic Fibrosis Resources