mortality stats for CF genotypes?

[imported_Momto2]

Anyone know where to get this info? Especially for DDf508?

 

[Melissa75]

Anyone know where to get this info? Especially for DDf508?

This website is very comprehensive and says genotype is a poor predictor of survival.
http://www.cftr2.org/faq.php#faq_8

This article goes into more detail about mutation type and severity of pancreatic and pulmonary disease in CF. Page 8.
http://onlinelibrary.wiley.com/doi/10.1046/j.1469-1809.2003.00028.x/pdf

This site notes a difference in life expectancy between classic forms of the disease and rarer mutations with milder presentation, but doesn't give specific numbers.
http://www.nationaljewish.org/healthinfo/conditions/cysticfibrosis/life-expectancy/


I'm hope someone else can chime in with more info for you.

Now for a thread hijack - I was sad to read in the "Is decline inevitable?" thread that your asthma component is making things hard for you. I'm curious if you've ever been to National Jewish (the hospital of the last link above)? They are specialists in allergy/asthma/immunology and take people from all over the country. I wonder if they could help you uncover the source of your drop in exercise tolerance. Also, if you've looked at the cardiac side of that.

 

[imported_Momto2]

Melissa, actually, I think I have some answers now. Looks like I have untreated CFRD. HOping to get it under control and reduce the inflammation!!!
THanks so much for the links, I'll go check them out PDQ. Oh, my heart is generally OK, but I do have an ASD (small hole in it). Its never given me a problem before, but if getting the blood sugar under control doesnt improve the asthma and breathing situation, that may be another thing to reexamine.

 

[Melissa75]

I'm sorry you've discovered that you have CFRD, and at the same time, happy for you that have an answer to the mystery, and there's a likelihood that treating the CFRD will improve your lungs and energy level and overall health. Let us know how it goes.