Porphyria

Because now, I have a rare disease. I mean, I’ve had it all along, but I didn’t know it until two weeks ago. And when I say rare, I mean RARE. Rarer than a straight male ballet dancer. Rarer than a steak that still moos. Rarer than an LA snow day. You get the idea - Sabrina

Porphyria

image by: American Porphyria Foundation
     

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What Would a Porphyric Do?

I’ve been getting a lot of messages and emails lately from people who are new to the world of porph, or who are waiting for a diagnosis. It’s driving me nuts. Not that I’m getting contacted,  (AT ALL! Keep ’em coming!) but that so many people have one of the same two stories: 1. They’ve been diagnosed, and now are facing a world of doctors with no information for them, or B. They’ve done their research, their symptoms match up, and they’re desperately seeking a medical professional to believe them and test them PROPERLY, so that they can get a diagnosis.

I have to say, I’m pretty darn lucky that my story went the way it did. I only spent 4 agonizing hospitalized days before I was handed…

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Last Updated : Thursday, March 5, 2020