If I Speak Up About CVID, Do I Really Make a Sound?

“I AM FEELING LIKE I MAY NOT EVER MAKE A DIFFERENCE.”

Through the power of the Internet (blogs, videos, message boards, or what have you) those living with rare diseases have the platforms to share their voices, to reach others and offer education, compassion, and encouragement. But even if we’re writing or talking about rare diseases all day every day, it can sometimes feel like those words fall on deaf ears (or blind eyes or whatever). Such is the case for qponsrme (which, best as I can tell, is the handle for a mom who likes to coupon).

In her blog, My Life as a Zebra with Common Variable Immune Deficiency (CVID), qponsrme tries to raise awareness for all primary immunodeficiencies, including her own condition, CVID. As she recently wrote, however,

“I’m sick of this damn CVID… I’m sick of being sick and not getting answers.”

HERE, HERE, QPONS!

She continues:

“IT’S A MONEY GAME FOR THEM, PERIOD.”

I’ve heard this before. I mean, we live in a capitalist society so it should be assumed that every successful venture ever is part of a money game. If you’re not worried about CA$H (yes, even if you’re a non-profit), then you’re not going to stick around very long. It sucks, but that’s America.

That does not mean, however, that Ms. Qpons isn’t having an impact. It doesn’t mean that even if her hands are tied in some aspects, her words don’t still reach people.

Right now, every American with a TV or radio is getting bombarded with political advertisements and debate recaps. Why? Because words have power. Words plant ideas, change people’s outlooks, and motivate them to action. So, qponsrme, keep that in mind. Even if you only reach one person with whatever words the powers that be might let you use, know that YOU’RE STILL REACHING SOMEBODY.

And as a dear friend of mine says whenever he tries to get me to go to the gym, “a little bit is better than not-a-bit.”


James Ernest Cassady

James Ernest Cassady

Though "Ernest" is a family name that's been passed down for generations, James truly earned his middle moniker when, at the age of five, he told his mother that "laughing is stupid unless EVERYBODY is happy." Since then, the serious little bastard has been on a mission to highlight the world's shortcomings (and hopefully correct them). In addition to his volunteer work at hospitals and animal shelters, James also enjoys documentaries and the work of William Faulkner. He is originally from Oklahoma.

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