It is a truth universally acknowledged that it's never easy having a rare disease. From Behcet's disease to cystinosis to idiopathic central precocious puberty, we all understand the pain, frustration, and…
What is it about inspiration? Where does it come from? If you are living with idiopathic pulmonary fibrosis (IPF), you may want to feel moved, and then to use that…
I’ve been there. You’ve been there. We’ve all been there. And I’m thinking it’s a safe bet to say that we all hate it. We all know the feeling. When…
Okay, I’m about to start this article with a very microcosmic example of a much larger medical solution. A couple of weeks ago, I was following Ray Charles’ lead and…
When it comes to evaluating websites to help you cope with how postural orthostatic tachycardia syndrome (POTS) affects your life, what’s your approach? Here’s what I look for (in order of…
Es una especie de insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión quira a nivel internacional . Y tal vez los médicos…
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