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

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

Conversations with Cystic Fibrosis Mums

Mums talk about daily life and parenting when you have a child or young adult with cystic fibrosis, as well as the option of organ transplantation in later years. The video also shows Isabel Stenzel Byrnes and Anabel Stenzel, authors of The Power of Two on their visit to Japan.



Cystic Fibrosis Resources

Gene Therapy for Cystic Fibrosis

Professor Brandon Wainwright explains gene therapy for cystic fibrosis. It is a bit out of date in regards to current research but it does include useful information about the potential benefits and limitations of genetic therapy.



Cystic Fibrosis Resources

Cystic Fibrosis Documentary

A short but comprehensive documentary about cystic fibrosis covering topics such as symptoms, genetics, treatments and the perspective of adults with CF. More information about cystic fibrosis can be found on the Mayo Clinic and Kids Health websites (there is also information especially written for teens and kids).



Cystic Fibrosis Resources

What is Bronchiectasis?

Bronchiectasis (pronounced bron-kee-ek'-tas-is) is a condition often associated with cystic fibrosis. Bronchiectasis is caused by recurrent (i.e. repeated) inflammation or infection of the airways in the lungs. This video explains what bronchiectasis is and shows the related changes in the affected area of the lung(s).



Cystic Fibrosis Resources

Cystic Fibrosis Classic - "Breathe"

This song has become a classic in CF related music. "Breathe" was written by Matt Scales and is performed in this video by three singers with cystic fibrosis - Tess, Josh and Rose. Matt lost his life to cystic fibrosis in 2007. He was 27 years old.

The three videos include interviews with the singers, the making of the "Breathe" video and the performance.




The Making of "Breathe"




Interviews with the Singers of "Breathe"



Cystic Fibrosis Resources