By Mark Tremblay
For those of you who don’t know BreatheCon which begins Friday, Sept. 20 at 7:00 pm and runs through Saturday, Sept. 21 at 5:00 pm is a free online event that gives adults with cystic fibrosis a source to learn about new cutting edge and soon to be released treatments and therapies as well as an opportunity to connect, share, and learn from others with CF.
These are just some of the popular topics the organizers lined up for us:
Adjusting to Life on CFTR modulators
Going Public With CF
Tips and Tricks on Living Life With CF
College and Career
Finding Life Beyond Your Role as a Patient
Starting Your own Home or Online Business
Cooking Demo
Life With a Nonsense or Other Rare Mutation
Workplace Rights and Job Security
If you’re anything like me the first time I heard about the CF BreatheCon I was thinking what the heck would I want to do that for?!?! I used to spend nearly all my mental energy trying not to think about CF except when I was having: an exacerbation, a bad clinic day, or waiting in the emergency room for admission to the hospital. In fact, “denial” was one of the primary mental tricks I used to deal with CF. Often in my fight to be “normal” I’d strive to avoid direct confrontations with CF (which could bring me face to face with the reality of my declining health not to mention mortality) and instead I’d use gimmicks to maintain my complex, yet fragile system of denial. One of my favorites was I’m feeling good so, “I’ll do my nebs but not my vest.”
I won’t deny that seeing and hearing other patients in various phases of illness (even virtually) and building relationships with other CF adults will most likely result in breaking down your denial more than binging on Netflix or playing your favorite video game. However, I found that all the mental energy I once spent trying NOT to think about CF sapped my strength and left me mentally exhausted. In fact, after the last event I found that the more I shared my life with others the less emotional burden I had to shoulder on my own and the easier my life with CF became. Participating in BreatheCon and building community with other CF adults has been the single most positive thing I’ve done to improve my emotional and mental health in nearly five decades. You might say BreatheCon has breathed new life into my life with CF.
One of our esteemed former BreatheCon organizers eloquently summarized it as follows:
“The best part of all of these virtual events for me though is the face to face that I get to have. CF usually feels so isolating to me and these events are helping me feel like that less and less each time I pick up a new way to stay connected with the community.”
Join me at BreatheCon September 20-21 to learn about new developments in the CF arsenal and stay throughout the weekend to share, learn, and connect with other CF adults which I assure you will lighten your load and breathe new life into your life with CF too! Register for BreatheCon 2019 today! www.cff.org/breathecon
About the Author: Mark Tremblay is a director for USACFA. He is a 50-year-old CF patient diagnosed in 1970. He's led a 20-year career with the New York State Division of Budget and Department of Health. Currently, he works full time, living with his wife MaryGrace of six
years and step son Sean in Albany, New York. He loves road cycling, motorcycling,
traveling, spending time with family and volunteering.