• Vinny

    Posted by jenny-livingston on February 3, 2020 at 7:37 pm

    We’re back with Vinny as our MCM! @vincenz99 is 30 years old and from NY. Here are a few things that’re important to his story with CF.

    🔥 I was diagnosed with CF at 6 months old, soon after the discovery of the CF gene. Luckily, my family didn’t let this grim diagnosis & unknown future keep me from living the life of a normal kid. I was always active; played sports; and loved all night video game sessions. I was lucky enough to be a relatively, healthy, normal kid for the majority of my childhood and teenage years. I had aspirations of becoming an artist or an actor, a teacher, then an obstetrician. You can imagine the looks on the faces of my family and friends when I became an accountant (I hated math class growing up!).

    🔥 As a young adult, there were times when I found myself battling mild depression. The Internet can expose the grim realities of this disease and create a firestorm of “what if” scenarios. I wanted to live a full life; I wanted to have a family; I wanted to see this disease cured. Thankfully with the support of my parents, family, and friends, I have learned to not sweat the small stuff and to live each day to the fullest. Mental health and CF go hand in hand: never underestimate the power of a positive outlook.

    🔥 Starting Trikafta was easily one of the best days of my life, so far. This drug is nothing short of a miracle. My weight and functions have skyrocketed; my outlook on life has improved; and for once, I never cough. Thanks to Trikafta, I am slowly getting back into my gym regime and hope to run a 5k marathon in the near future. I am also back into hobbies that I haven’t been able to do in quite some time — kickboxing, hockey, cycling, and lifting. I can also sing (badly) in the car now without hacking up a lung in the process. With my new lease on life, I want to continue raising awareness for CF and the wonders of this drug. I want every patient who can benefit from this drug to get it ASAP! In non-CF news, I love binging movies & television on my free time; I am an avid NHL fan; I speak multiple languages; I love going to the gym; and I love to reminisce about 90s Nickelodeon.

    Question: CF doesn’t define us. What is a hobby you enjoy that helps you live with CF? 

    jenny-livingston replied 4 years, 2 months ago 0 Member · 0 Replies
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