Here's an excerpt of a blog post I recently write about this fundraising--and sarcoidosis--trip. And it is quite a trip! (You can read the full article at www.darleneanitascott.com):
"One of the things that truly sucks about living with a so-called rare disease like sarcoidosis is you’re invisible even in the spaces that are designed to help you. In clinical environments, you are a question mark. There are so many presentations, you could be suffering from anything…or nothing.
In the world, you don’t 'look sick.'
In research environments you do not take precedence. Without research there is no FDA testing and without testing there is nothing to approve. Yet we know there are many potential treatments for all the iterations of sarcoidosis. I’ve been prescribed several.
None of the drugs currently used for the treatment of sarcoidosis, outside of those two, have been rigorously studied. Yep, that includes the ones I’ve taken. When they are prescribed it’s based on how they worked for other diseases with similarities to sarcoidosis.
The research I’m literally running for will make possible treatments that give people like me a better life and moreover a better quality of life free from worrying about managing all the practical, mental, and physical demands of the disease.
My insurance company, like the copay-assistance agency, twice denied me one life-extending treatment because of this conundrum. I’m surviving out of spite. Okay, it is indeed God’s grace for real. And, because over time my body adjusted to the medication that my insurance company was willing to fund though it’s no telling how much damage my heart sustained–that it didn’t have to–in the meantime.
Every mile I complete is hard won for many reasons, some named here. That’s why this fundraiser has never really been about a marathon. It’s way bigger than a marathon."
Comments