Today is Rare Disease Day. For those of you who don't know, Rare Diseases are those that (in the U.S) affect less than 200,000 people. Nonetheless, there's over 6,000 Rare Diseases, and this is an important issue for me because I suffer from Autoimmune Polyglandular Syndrome Type 1. Yes, it's the reason why I seem to spend half my time in a hospital.
These diseases are called rare, however, because we don't understand them. Because we don't get as much funding as other better known diseases. Because there's such lack of knowledge doctors don't know about them. Because so little people know about them we can be called liars, or hypochondriacs, and all because of an illness that's not well understood. And for every Pablo that that survived to this day and can live a relatively comfortable lifestyle, there are ten of me who have never been diagnosed correctly. Who have never had the financial access to support them. Who, like me, may have started in a third-wield country, but unlike me, didn't live past three due to the lack of awareness.
I write this all today because I recognize how lucky I am. I know it sounds horrible to say, but I don't deserve it. So I use the little time I have to speak out about these issues; so that twenty years time a child with a rare disease can know, so their families don't treat them like a shameful secret that must never be discussed, so they can have one specialist that knows what they have and treats them. John F. Kennedy, Pope John Paul II, Stephen Hawking, all suffer(ed) from rare diseases. And look at what they did. How many have we lost because of our lack of awareness?
If anything, I hope you read this and do a bit more investigation on rare diseases. As long as you know we exist, as long as you know that we are present, as long as you know that we suffer but push through, then I feel like my advocacy will have educated a bit more on this issue.