Rare Disease Day 2019

8c97c08d-a685-4f8b-a132-912ebb90e3a5Today is Rare Disease Day! The theme for this year is #ShowYourStripes, which I love because of its reference to the term “zebra”, which many of us with rare disorders call ourselves. This comes from the old phrase physicians turn to when dealing with patients; “when you hear hoofprints, think ‘horse’, not ‘zebra’.” This mindset (while reasonable) makes it difficult for those who have rare conditions to get a diagnosis, and then treatment for it.

Today, I am going to be participating in Rare Disease Day by uploading a video briefly explaining my conditions (coming soon) and hosting a special stream on Twitch.TV/insomniadoodles from 2pm EST until 5pm where I will be answering questions about my rare disorders and inviting others to share their stories as well!

I hope to see you there!

EDIT: Here is the stream archive! Please feel free to watch, as this was a wonderfully informative and fun stream! Skip to 00:19:30 to get past technical difficulties.

 

Visit: www.rarediseaseday.org for more info!
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