Positivity

Search in Google: “Good things about Cystic Fibrosis”

Results: Good Hospitals for CF, Good CF health facts, Bad Days with CF, Facts about Cystic Fibrosis

Search again: “Great Things I learned from having Cystic Fibrosis”

Results: Learn about Depression and Anxiety and CF, What is Cystic Fibrosis?, HowStuffWorks Cystic Fibrosis, Living with Cystic Fibrosis

Let me know tell you, after an exhaustive search to find something positive about this life-changing disease, I became exhausted myself.

For those affected by Cystic Fibrosis, caregivers and patients alike, let me paint a better picture for you.  I did some more research and this is what I wish appeared on Page 1 of every Google Search for “Cystic Fibrosis”

1.     People with CF who are LIVING, BREATHING and SUCCEEDING at 50+ have beaten the odds!

http://clubcysticfibrosis.com/articles/category/club-cf-50-plus

2.     The Surfing Solution: How Seawater Can Help Treat Cystic Fibrosis

http://www.wired.com/2013/11/surf-for-cystic-fybrosis/

3.     Last September I was inpatient at Massachusetts General Hospital, in Boston. While there, one of the nurses told me that they, recently, had a CF patient in the hospital who was in his 90's.

http://forum.cysticfibrosis.com/threads/17592-Oldest-Person-With-CF

4.     Until recently, few children ever survived to become adults, but in the past few decades survival rates have increased dramatically, and CF is being recognized as a spectrum of disease

http://www.medscape.com/viewarticle/716815

Doug Ornoff's Iron-Distance Triathlon Fundraiser for Team Boomer and You Cannot Fail

http://www.firstgiving.com/fundraiser/DougOrnoff/ppd-beach-2-battleship-triathlon

My name is Meghan and I am a 24 year old person with Cystic Fibrosis. I think the words “person with Cystic Fibrosis” is key because these describe exactly who I am—this disease is only a small piece of me. Which is why I never thought I would be writing a blog on it. With all the negativity in this world on CF, however, don’t we need some positivity?

New parents, a note to you: Please remember this. Your child will have challenges in their life and so will you. They may be directly related to CF and they may not be. At the end of the day, you still have a beautiful, intelligent, fascinating child sitting right in front of you that is still just that—a kid. Their experiences with CF may shape them in a way different from others, but in my experience I can say it has shaped me for the better. You heard it—I would not be the same student physical therapist, blonde, confident, excited, thriving, elated, travel bug, book loving, and half-marathon runner of a person today if I was not born with the puzzle that is cystic fibrosis.  If nothing else comes from this disease, I guarantee that it will be that your child will love stronger and deeper then a lot of people are capable.  Please trust me in this and remind your kids of this.

Tweens/Teens/Adolescents with CF: have fun with life. If you want to get involved in the CF world and fundraising that’s fantastic. But I beg you have FUN—try new sports, take challenges, ask questions to your doctors, do not be afraid of anything and do not let CF hold you back. You have a huge life ahead of you so get pumped and excited to light up the whole world.

Adults with CF: Like most people I’d say something like “congrats, you made it”, but honestly that’s not how (at least I) think. As we get older, yes its true, every year is a gift—for CFers and non-CFers.  However, I think that a constant reminder of that gift, every year, can be both uplifting but annoying. I do not want to be told that I am “lucky” to have another year. For me, this disease is not terminal. It is a journey.

I wanted to start this page with one goal in mind: positivity. Awful stories and losses, I completely empathize with, and honestly many I can only understand up to a certain capacity because I have never been in them. But if I can offer the CF community some light on the topic, just some hope, and deviation from the sad information we are OVERwhelmed with in search engines, then I will be entirely satisfied.

Breathing & Beating,

Meghan