Self-defined
I remember when I worked at my previous job, and working with folks with progressive disorders, incurable deterioration of body systems that would get worse and worse for the rest of their lives. And I remember what one of the biggest issues was around research. Here you’re probably thinking that this is a no-brainer. Find a cure, right? But in reality, no. In reality, the biggest priority of most of our research was not directly about a cure, rather it was about accurate diagnosis. And while practically this starts to make sense when one considers that (like if you’ve ever watched House) you can’t start treatment until you know what the problem is called, from a patient (or as we called them, client) perspective, diagnosis [...]