So February 29 is Rare Disease Day. This year marks the fifth anniversary of the event, and what started with a few countries in Europe has now spread to over 60 countries. The main focus is to raise awareness among the public and decision-makers about rare or ‘orphan’ diseases and their impact on patients’ lives.
Their definition of a rare disease is one that affects a small number of people. In Europe that means fewer than 1 in 2000. In the United States it means fewer than 200,000 at any given time. But if it disrupts your life and is potentially fatal isn’t it a rarity?
Lets take a look at our group of supported diseases:
Each of these groups represent but a fraction of the number of people in the world, and with our world population pushing 7 trillion, that may not seem like many. But if you look at them as a group, it is millions of people, and that IS a lot. There is someone born in the United States every 8 seconds, and someone dies in our country every 12, so there is a pretty good chance that at some point in their lives they will have crossed paths with someone facing one of these diseases. Think of it as a “Six Degrees of Disease Separation” game.
Perhaps that community doesn’t seem so isolated any more.
And none of these diseases are brand new. People have been researching narcolepsy, Huntington’s, pulmonary hypertension, and the others for decades, and in some cases centuries. They aren’t the common cold, but they have a commonality: They make people sick, make them scared, and quite often are not curable. So having Congenital Factor XIII Deficiency doesn’t make you unusual; rather it makes you a part of a community.
Perhaps we need to make February 29 just like every other day, a “Living With My Disease Day”, and raise the awareness that there is this vast network out here that is trying to get by. You get a birthday once per year (with the exception of our Leap Year!), and anniversaries creep up on us, but every morning that you wake up and take a breath it’s a “rare disease day”. Let people know why you’re observing it.