The basics about Kristen's disease - #CFAWARE
What is Cystic Fibrosis?
What is the Delta F508 Gene Mutation?
What is a Gastric Pacemaker?
Gastric Pacemaker Success Stories (please send us your story!)
Morgan Hood
Resources for other CF Warriors
Cystic Fibrosis Foundation
Oregon Chapter - CFF
Boomer Esiason Foundation
Jerry Cahill's Podcast Series: Wind Sprints
CF Source
CF Living Online Community
The impact of science and research on life expectancy
Historically, children with CF died as infants, and as recently as 1980 the median survival was less then 20 years. However, over the past 3 decades the lifespan of CF patients has risen dramatically, and in 2006 the median survival in the United States was 37.5 years (shown by red line, figure below). Many factors influence the health of CF patients. Older adults with CF had fewer treatment options during their childhood when compared to children born more recently.
More about the Graph:
Improving survival in CF. The red line represents the median survival (in years) for the CF registry population in the United States. Important scientific milestones and advances in treatment are depicted. (Adapted From 2005 Annual Data Report to the Center Directors. Cystic Fibrosis Patient Registry, Bethesda, MD; used with permission).
For the science nerds :)
http://www.ncbi.nlm.nih.gov/pubmed/16962469
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1717831/
http://journals.lww.com/jpgn/Fulltext/2004/09000/Electrogastrography_Reveals_Post_prandial_Gastric.5.aspx
Happy to add additional resources to this page - please email them our way!
What is Cystic Fibrosis?
What is the Delta F508 Gene Mutation?
What is a Gastric Pacemaker?
Gastric Pacemaker Success Stories (please send us your story!)
Morgan Hood
Resources for other CF Warriors
Cystic Fibrosis Foundation
Oregon Chapter - CFF
Boomer Esiason Foundation
Jerry Cahill's Podcast Series: Wind Sprints
CF Source
CF Living Online Community
The impact of science and research on life expectancy
Historically, children with CF died as infants, and as recently as 1980 the median survival was less then 20 years. However, over the past 3 decades the lifespan of CF patients has risen dramatically, and in 2006 the median survival in the United States was 37.5 years (shown by red line, figure below). Many factors influence the health of CF patients. Older adults with CF had fewer treatment options during their childhood when compared to children born more recently.
More about the Graph:
Improving survival in CF. The red line represents the median survival (in years) for the CF registry population in the United States. Important scientific milestones and advances in treatment are depicted. (Adapted From 2005 Annual Data Report to the Center Directors. Cystic Fibrosis Patient Registry, Bethesda, MD; used with permission).
For the science nerds :)
http://www.ncbi.nlm.nih.gov/pubmed/16962469
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1717831/
http://journals.lww.com/jpgn/Fulltext/2004/09000/Electrogastrography_Reveals_Post_prandial_Gastric.5.aspx
Happy to add additional resources to this page - please email them our way!
