An Aware World

I would be remiss if I didn't mention that April is Primary Immune Deficiencies Awareness Month. Whoop tee doo. Every year I post a bunch about it, every year it's the same. People ignore it because it's not their issue. Ok whatever. That's fine.

This year, I've decided to go with a different thought path. What would the world look like if it were more aware? More specifically, what would the lives of my friends be like if we lived in a world where PIDD wasn't so strange or foreign or scary or... insert your favorite negative adjective here. It's always going to be a life altering diagnosis, but it doesn't have to be a life-ending one.

My friend G would be studying for her PhD in vocal performance and pedagogy. Her coloratura would be known in the opera community as one of staggering power and emotion. She would travel the world, in demand for her pitch perfect interpretation of Rossini. She would draw crowds wherever she went. Her classical albums sell consistently well and she lives quite comfortably. The adoring crowds love her vulnerability and are impressed that she balances her busy career with motherhood and chronic illness.

My friend L would be doing a number of things. What I most see her doing? I think she'd have her own dance studio, where she'd share her love of ballet with students young and old, teaching them the techniques she learned at ABT and Joffrey. The positive and creative atmosphere would inspire her students and attract world-renowned talent for masterclasses in her studio. She would host special performances of her studio's award-winning performances for children from the local hospitals, knowing that, because of her great team of doctors, she was able to live her dreams.

Why are these scenarios not the case? My friends were not diagnosed or treated properly. In some cases, they still aren't. They could have been. It could have been a different world for them. I hope that, someday, little girls like G and L will be able to fulfill their dreams and not feel so limited. I hope that PIDD becomes something that can be more benign and not cause lung damage, ridiculous infections that require a year on antibiotics, and will be something that is more manageable. I want PIDD patients to have full lives. All of them. Not just the lucky ones who are blessed to be diagnosed early or have uncomplicated presentations.