Median age of survival for CFers surpasses 50 years of age!

[enniob]

In a press release from the Canadian Cystic Fibrosis Foundation on Oct. 15, 2014:

The median age of survival for Canadian cystic fibrosis (CF) patients continues to increase in an upward trend – currently estimated to be 50.9 years of age, it is among the highest in the world. This milestone was recently announced at the North American Cystic Fibrosis Conference in Atlanta, Georgia.

Based on the most recent Canadian Cystic Fibrosis Registry data, revealing clinical trends and insights into the Canadian CF population, the median age of survival reflects the dedicated work of CF researchers and clinicians – as it breaks the half century mark. The data are collected from all 42 CF clinics located across Canada.

"The median age of survival in Canada for CF patients has now passed 50 years of age and shows tremendous progress in the fight against cystic fibrosis," says Dr. Anne Stephenson, Director of the CF Registry. "We hope the Canadian Cystic Fibrosis Registry will continue to enhance knowledge and highlight key trends that will lead to improved CF research and treatments."

We all saw this coming and expected these announcements to start hitting the news wires. Canada is leading the announcements and it will not be long before other foundations like the CFF start to release new results on median age of survival on CF patients. We will see 50+ years become the norm for CF life expectancies over the coming years and this will only grow as education, therapies and treatments improve and become really accessible to CFers and their caregivers.

Definitely a clear sign that all the hope and effort put in by the CF community is having real impact on life years and quality of life of CFers and their families.

Source: http://t.co/k5k5vf4CX7

- Chris

 

[Guest]

This is great but kinda of unreliable as it lumps in every genetic strain. Some are worse than others. You can also be born at different severity. At least that is what I have always been told. Am I wrong in this assumptions?

 

[enniob]

Hi Gorf, yes, you are right! The Canadian CFF released a median life expectancy for CFers. Not sure how the number was generated but I will look for data on this and report. You are right and there are many genetic predispositions to CF that can skew this number a lot. That's why it is so important to know your mutations and get the best "personalized" treatment possible to CF. Knowing your exact mutations and having your treatment team design therapies that include these mutations is so important to a CFers outcomes! Look at Kalydeco for example. More drugs like this targeting specific mutations are becoming available. Knowing mutations also allows a care team to treat CF and focus on areas of importance, for example the pancreas and GI as some mutations cause more manifestations in those organs and can lead to CF related diabetes or pancreatitis which can be very serious and life shortening...detecting this early through mutations and other factors can lead to a prognosis and earlier interventions. Always question your treatment team! Be vigilant.
- Chris