What Is Muscular Dystrophy in the New Millenium? Classification causes great confusion and impairs funding and advocacy.

I've been blogging for a few years about misophonia, an auditory/neurological disorder that I have advocated for because I and (more importantly) one of my adult children are affected. Recently, at age 54, I was also diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD). Of course the first question I asked myself was "What have I been doing all of these years?" I've been working on one disorder while not knowing that I had a muscle wasting disease.

I truly had to pause and assure myself that I had not done the wrong thing over the past 20 years.  While it is obvious that certain diseases and disorders are worse than others, I had to do some serious "soul searching" as to whether I should continue my efforts in regard to misophonia or dedicate my time, energy and skills into FSHD advocacy. I am not sure where I will ultimately end up in terms of this journey. I have accomplished a great deal regarding misophonia (e.g., established research programs, advocated for children and families, written for websites and blogs to circulate accurate information to help others). So, right now I am trying to do both! 

However, this blog is dedicated to FSHD. This first post discusses the moral quandary we face in terms of the many muscle diseases, all of which are in need of advocacy and research funding. However, right now we are facing great difficulty in fundraising because the classification of the various muscle diseases is highly confusing, and this confusion ultimately impairs funding.  Click here to continue reading