The Long Journey Here
Finding care for superficial siderosis patients moves in slow motion—the time spent searching for a diagnosis—next, the search for information. In May of 2015, while we were still in an early stage of information gathering after Gary’s diagnosis, I created this website with just an inkling of what was ahead. As I recorded our experiences, an unmistakable post-diagnosis plan began to take shape. Little did I know, it would take years to finish the long journey here.
It has ...