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!
2.
The Surfing Solution: How Seawater Can Help Treat Cystic
Fibrosis
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.
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
Doug Ornoff's Iron-Distance
Triathlon Fundraiser for Team Boomer and You Cannot Fail
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
