Okay, here’s what’s terrifying to me—the fact that there are SO many rare diseases out there and science hasn’t even begun to skim the surface of knowing how and when to diagnose them.
For example…
I bet ALL OF THE MONEY that you’ve never heard of microscopic polyangiitis (MPA), a very, very rare disease, unless you or a loved one has it.
Basically, the blood vessels become inflamed (vasculitis), which isn’t great for the organs. I could spend HOURS researching MPA and still not fully understand it.
Which makes me wonder…
What if we were to spend three hours on researching every chronic, rare disease out there? Every single one. That would take our ENTIRE lives! I calculated it.
The thing is… if rare diseases didn’t affect people so severely, it wouldn’t be as big of a deal. But they do! They ruin people’s lives—people like this woman, who recounts her experience with MPA in a short blog post.
She began experiencing headaches, which led to cramps in her legs, which moved to her feet. Soon enough, she was in the hospital with an inflamed kidney. The pain got so bad that she could hardly walk. Now imagine that without knowing why!
Millions of people with rare disease know this exact story. Because they’ve lived it.
Luckily, this woman with MPA is now diagnosed, and apparently in full remission! But there are still tons of people out there living with pain, fear, and symptoms of something for which they have no name!
I guess what this realization has taught me is that we can’t ever begin to judge another human being. We never know what they are going through. They might be diagnosed with something; they may be experiencing symptoms of an undiagnosed disease.
Being that there are so many diseases out there, there’s a good chance that more than one person in the room you’re in suffers from one. Unless you’re reading this in your bedroom alone—in that case, disregard. But you get the gist…
