Friday, May 17, 2013
Recently I started participating in an Ehlers Danlos page on Facebook, as well as the Ehlers Danlos National Foundation. The information I'm gathering from these pages is INCREDIBLE and amazingly validating. So much of what they're posting about the condition explains my symptoms, and contradicts my doctors who know little or nothing about the condition (and I'm starting to suspect have no interest in learning about the condition either).
A few hours ago they posted a portion of a paper/lecture by a doctor who treats patients with my specific form of EDS. I searched online for info about the doctor then searched to find the full text of the paper/lecture. Reading this is like reading the history of my life! I could print this out and highlight everything that relates to me and have more than half of it highlighted. Included in there is a section that says almost the same thing I said in my last blog! This also talks about other symptoms/conditions that I've been too AFRAID to tell my doctors because they will never believe me!
In fact, he even states in there that continually pushing through the pain and not getting proper treatment will cause the conditions to worsen more and more, which means THEY CAN NOT TELL ME THAT THIS IS NOT REAL AND THAT I'M FAKING OR MAKING THIS UP!
If anyone has some free time (warning: it is LONG) and wants to read it, it's in pdf format here:
I'm actually still in shock here as I write this; it seems almost too good to be true that I have proof now!