Today is the ninth annual Rare Disease Day, an occasion honored each year to raise awareness around issues related to rare diseases and disorders. Taken together, rare diseases affect 1 in 10 Americans, and affect more people than AIDS and cancer combined. Worldwide, if we all lived in the same place, we'd make up the world's third most populous country. There's a lot more where that comes from, if you're looking for reasons to care about rare conditions.
This year's slogan is Join us in making the voice of rare diseases heard, which is exactly what we're all about here at In Sickness + In Health. We'll be sharing rare disease facts and retweeting and reblogging rare disease posts over on Twitter and Tumblr all day. Come learn with us!
To celebrate Rare Disease Day, we've also produced a special bonus episode of the podcast, and it's our first clip show! You may or may not have noticed that I’ve been making a show that's secretly about rare disease all along, so it was really exciting to put some of it together in this episode. I’ll be talking to many more rare disease patients in episodes to come, but so far I’ve talked to several people with rare and rarely diagnosed diseases and disorders, as well as people with rare manifestations of more common conditions. This episode highlights some of the challenges of living with rare conditions, told as only those who have lived them can.
And on this episode of the Just Talking Podcast with Christopher, my guest from episode 07, you can hear my own story of the long and painful process of finally getting a rare (or perhaps just rarely diagnosed) disease diagnosis, after 20 years of experiencing symptoms.