I try to imagine the following the following:
I have a health condition that affects every moment of my day. I have good days. I have bad days. I have a diagnosis!
But, I get blank stares because the name is unfamiliar to most people. Most medical doctors are unfamiliar about how to treat me. I never see the disease mentioned in the news. There are no 5k walks to raise money. I walk a unique path of my own.
I have a rare disease.
I can only imagine how frustrating and isolating this must feel at times. Our culture celebrates the rare and unique in many ways. Unfortunately, we do not have this attitude to those with rare diseases. The 90-second video below illustrates this point in a direct and powerful way.
No joke. This video is awesome!
There are over 6,000 rare diseases affecting the lives of millions of people. Rare diseases (sometimes referred to as Orphan Diseases) require research, care, and attention just the same as common diseases.
Next month, on February 29th, is Rare Disease Day. (Get it?) It is a day designed to focus a spotlight on those affected by these diseases and raise awareness of the needs of this community.
Perhaps, next month, we can all keep an eye out for Rare Disease Day. Let's not let the rarest ones be invisible.