Life with CF

No one understands life with CF like someone living with CF.

The sites linked below offer stories from contributors that cover the broad range of challenges – and successes – that come with life with CF.

Our Transplant Story was written by a member of our local CF community. The opening paragraphs explain why she took the time to share the experience.

Lung transplantation is becoming a more viable option for people living with CF. My husband received his transplant in New York City at NY Presbyterian/Columbia in 2012 when he was 45. We’re sharing our story in the hope that it makes your path a bit smoother.

At many times during our journey, we were overwhelmed by the new experiences – decisions and adjustments we had to make: travel arrangements, adapting to a new medical model and team, and finances, not to mention developing a new mindset and routine. These are all challenges that we encountered and that you will be – or are – facing.

Power of Two

In May 2016, CFFC hosted a screening of The Power of Two, an inspirational movie about the journey of twins living with CF. A member of our community who was a pioneer in transplantation arranged a virtual interview with the authors as part of the presentation. The Power of Two web site offers this brief description of the movie

A story of twin sisters, two cultures, and two new chances at life. Inspired by their 2007 memoir, “The Power Of Two“ offers an intimate portrayal of the bond between half-Japanese twin sisters Anabel Stenzel and Isabel Stenzel Byrnes, their battle with the fatal genetic disease cystic fibrosis (CF) and miraculous survival through double lung transplants. Defying all odds, Ana and Isa have emerged as authors, athletes and global advocates for organ donation, and their connection to the CF and transplant communities provides rare insight into the struggles — and overlooked joys — of chronic illness.

You can now watch the movie on line through The Power of Two website for a fee of $5.99. The movie runs a little over an hour and a half.