Stacy that is all great!
You have the most special of doctors? A CURIOUS one! That alone is a gift in itself.
That you mite be able to educate other doctors, interns, nurses, PEOPLE about what this all does to us – on that key personal level is crucial to the whole awareness process, that could prevent someone being mis-diagnosed in the future!
I realize that this could be a huge extra effort for you, but I believe that you are more qualified and up to the task than many.
Hope and good things!