Monday, November 6, 2017

HUGE NEWS!! 47 and Counting!!

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and I joined the fight. 

This past weekend at NACFC the median age of survival for CF was raised to 47. This is huge news!! I have seen some mixed reviews about this in the community. I have seen both positive and negative thoughts on this and a lot of misguided information. I think more information and data from the CFF would be welcomed by both sides. 

What does raising the median age of survival mean exactly.... well it doesn't mean we all automatically live to 47 and that's it. Yes I have seen this out there. 

I for one see it as a positive and amazing stride in getting us closer to a cure. Raising the median age of survival means to me that... 

1. My lil CF kiddos have a real opportunity to live longer lives!! 

2. Newly diagnosed children of today and the future are going to have even longer lives than us diagnosed in the 70s and 80s. 

3. These parents of newly diagnosed children are going to have such a better story to tell than my parents. Their experience will still be devastating to hear but not so negative and grim.  

4. This means that these drugs and medical advancements that we all work so hard for are working and it means there are options out there. When I was diagnosed there were no drugs available. We have come so far!!! 

5. It means all our hard work and time as an older generation of CF patients and loved ones spreading awareness, participating in drug trials, and fundraising is not being wasted. 

This huge news is more of a positive win for the younger generation and I for one am completely ok with that. It's why I do what I do! 

Some of my fears that I have with this huge news is... The CFF needs to stress it's the MEDIAN age of survival. I would hate for the increase in age to deter donations. We are still losing children and young adults to CF and the momentum of fundraising, research, and clinical trials CANNOT slow down! 

There will still be so many children and young adults that do not make it to 47 having a number like that can set up people's mind for failure and that scares me. 

My whole life or when I could truly grasp the fact about CF and what that meant I knew the median age of survival was 37. When I turned 37 a year and a half ago it was such a surreal feeling. I almost felt like a huge weight in some way was lifted off my shoulders. I remember thinking to myself ok. I did it!! 

I can't help but think now that I am in for another giant fight to get to 47.. I like to have goals and I like to surpass those goals but I also need to be realistic. Having unrealistic goals is stressful for anyone. Trust me I would love to live to 90 but again I don't want to set myself up for failure. Don't get me wrong I'm ready to fight and fight so hard. 

I have tried to never let statistics keep me from living my life or dreaming the impossible. I always say keep your hopes high and dreams BIG! Numbers or statistics should never define us, I feel we are constantly proving that ever day. All we truly know is that this very moment is all we have, and that's what we need to focus on! I know that nothing is worth more than this day, right here.... right now. Fighting CF takes a village, I couldn't be more grateful for my village that has helped me get to this very moment in life, and that is also worth celebrating in my book! Breathe out Love! Xo❤️