Happy Rare Disease Day!! While to you this may seem like an odd holiday, to the 30 million people in the U.S. who suffer from a rare disease, it is the one day where everyone takes a minute to understand what we go through. For us, rare disease day is every single day because our lives are impacted by our illnesses daily. They have changed our lives drastically. Over 7,000 rare diseases affect 30 million Americans. That means that 1 in 10 Americans suffer from a rare disease. 50% of these diseases affect children. Most of these diseases have no known cure.
My disease, Postural Orthostatic Tachycardia Syndrome is not even considered a rare disease because of the vast amount of people who have it. However, it is often included in rare disease day because, sooo many people, maybe even including you, haven’t ever heard of it. POTS is often coined “the most common condition you’ve never heard of.” This goes to show that there are many people who suffer from diseases that you’ve never even heard of. That needs to change! I hope you take a minute today to understand what living with a rare unknown disease may be like.