There are plenty of reasons why my life is rare

Several pieces of my life puzzle happen to be rare.

First thing’s first: I have cystic fibrosis (CF), a rare disease that affects about 40,000 people in the United States. (The U.S. Food and Drug Administration considers a disease rare if it affects fewer than 200,000 people.) More significantly, I’m in the 10% of the CF population who don’t qualify for modulators because of my rare mutations. That means the cutting-edge miracle drugs don’t apply to me.

I hit the lottery, I know!

It’s also rare to have had a double-lung transplant like I did. In 2021, doctors performed about 2,000 double-lung transplant surgeries in the U.S. Plus, I’m left-handed, which puts me in the roughly 11% of the U.S. population with this trait.

Anyway, now that I’ve shared those facts with you, let’s dive into the fun stuff.

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Beyond the physical realm

If you were to ask me what makes me rare, I’d answer with qualities that are unrelated to my disease. While many of my characteristics have been shaped by CF, they aren’t what drive me. By that I mean they’re rarely at the forefront of my mind when I’m interacting with others, and they aren’t what informs my life choices.

Instead of having tunnel vision, I’m multidimensional. I’ve lived and seen too much, which has taught me that everyone’s life experience is different. That rings especially true in the rare disease realm.

There are insurmountable possibilities for every human being, which are compounded by a person’s genetic makeup, environment, and life choices. Each person’s perspective is different based on personal experience; there’s no “one size fits all” for any circumstance. That’s why I like to look at each situation from multiple angles.

I live authentically and vulnerably, which I find to be an anomaly these days. In turn, I don’t care what others think about me, which makes it hard for me to relate to most of my peers. I’m not everyone’s cup of tea, and that’s all right. I have incredible friendships that fill my soul, and that’s most important to me.

At the core of who I am, I care about others deeply and have a big heart. At least that’s what my husband says. I love people as they are, regardless of their belief systems in any arena. That seems to be a rarity these days in such a polarized environment. This trait has made a difference when connecting with my counseling clients and people from all walks of life.

I’m not afraid of death. I attribute that to almost dying several times and living to tell about it. I laugh and tell people that I’m tough to kill. But in all seriousness, I know how to fight for my life. My faith in God has also alleviated the fear of mortality.

Since I’ve experienced dramatic pendulum swings in my health, nothing is the end of the world to me. I can handle uncertainty like a champ. Curveballs? I may as well play in the Major League. I have a track record of hitting them out of the park, adapting to whatever is thrown my way.

I’ll let you in on a secret: Normal doesn’t exist. It took me a while to figure it out, but every human being is different. The more we embrace every part of us, the more we can celebrate how we were created.

Perhaps that’s the most rare truth about me: I live the life that I’ve been granted with full abandon.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.