Rare Disease Day 2017

Today is Rare Disease Day!

The purpose of this day is to make others in our community (including those in the medical field and policy makers)  be aware of the importance of research for EVERYONE. The more we know, the more we can detect and treat these diseases FASTER and more efficiently. It breaks my heart to hear the struggles families have to go through to get ANSWERS. Even worse, when after everything we’ve gone through have no hope for a cure or treatment.

From my experience, I’ve realized that the lack of information for my disease could cost me my life. Fortunately, I was able to get in touch with a moyamoya community who have banded together and shared their wealth of knowledge with each other. While it is helpful, it isn’t enough. We need experts to be on board with us. We need them to understand and gather the information we have collectively and fight for a cure with us. And, this isn’t just for those experiencing moyamoya. I’ve met others who have a rare disease, kids and adults a like. …. We all  experience the same thing.

A misdiagnosis or lack of information. Usually, we are left waiting for answers. If there are answers.

I’ve met others like me who fight for life, knowing that the knowledge they gain from research helps everyone else. I’ve come to know parents who travel hours to see the doctors they need to get a proper diagnosis or a second (or third, or fourth) opinion. We also often travel to medical facilities because the ones near us just doesn’t have the equipment we need to run necessary test.

I’ve also found that those experiencing rare diseases often celebrate and mourn together. I found it extremely helpful to be a part of a community. And yet, there are other diseases out there that don’t even have that luxury.

I’d also like to destroy the notion that a rare disease hits just the adults. EVERYONE OF ALL AGES, GENDER, AND ETHNICITY is affected. It doesn’t discriminate…. but a lot of us are in the dark of vital information we may need to live. Please help us spread awareness, not just for Moyamoya, but every rare disease.

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