Mighty Member since July 2017
Daydreamer, Chaser of Inspiration / I illustrate moments from my life; primarily thoughts on living with a rare, progressive and debilitating muscle wasting disorder as well as chronic issues like pain and nerve pain. I have a very rare genetic muscle wasting condition called GNE Myopathy (aka HIBM). My genetic condition is progressive, slowly taking every muscle until quadriplegia is reached. I've been an advocate for my condition since 2007. I began blogging and illustrating my disorder to bridge greater understanding but I soon realized you don't need a rare disease to understand my depicted emotions, and most can relate to loss. So many of us grieve in our corners in silence aching to be understood and I hope my drawings can put an explanation to the unexplainable and shed light on those who feel alone.