Are You Undiagnosed? Share Your Story

It took 19 years for doctors to finally diagnose me with a rare immune deficiency disease. The total number of undiagnosed patients is unknown but considered to be vast. To provide some perspective on this epidemic, consider that it takes an average of 7.6 years in the United States to uncover a rare disease diagnosis. Worldwide there…

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But…Like…What Do You DO For a Living?

I’m recovering from throwing the season’s wildest four-year-old poodle’s birthday party. It’s been a hard week trying to meet his expectations and surpass his hopes–but after twelve orange tennis balls, a granola cake, and the help of a few drunk friends: we made the impossible possible.   Okay, maybe the six foot high scene setters…

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The Elevator Pitch: How to Quickly Explain Your Disease (Published in this month’s IG Living)

Another big thank you to the wonderful editors over at IGLiving.com, IG Living Magazine for publishing my newest post on chronic illness for 20-somethings. This month’s column talks verbiage in the form of an Elevator Speech. Kind of like an automatic speech that pops out whenever you get the deer in the headlights look after…

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World Rare Disease Press–Videos, Editorials and More!

The Balancing Act Appearance for Lifetime’s Behind the Mystery aired this morning for World Rare Disease Day. Check out the video below: I had the pleasure of being asked to host this month’s WEGO Health Activist Roundtable. I invited a few friends including Kevin Alexander–PKU Advocate.Kevin has made some incredible documentaries that you might want…

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