When the doctor first suggested that M.D. had Ehlers Danlos Syndrome, the internet was still in its infancy. From the little I could gather, we needed to determine what type of EDS she had, and whether her vascular system was involved. And that she should be seen by a geneticist.
Now, I don't really know if the specialist we were sent to was actually a geneticist. His shingle read "endocrinologist," which I always thought was a whole 'nother specialty. But what did I know of the wacky ways of medicine? So, in the door we went. After not too long a time in a very unpleasant waiting room, we finally were ushered in to see the doctor.
He was not a particularly inspiring sight nor did he act as if he had any interest at all in M.D. The first thing out of his mouth was "Why are you here?" When I explained that we were looking for an opinion about what sort of EDS M.D. might have, or if she had it, he said "She's not an FLK" and left.
I was aghast. An FLK? Even then, I knew what that meant...a funny looking kid. The guy was into freak shows. I guess we were lucky, seeing as he was a jackass, that he didn't ask M.D. to do the standard EDS sideshow tricks.
But it was, for us, a completely useless medical trip. We were trying to get some advice about her pain, her mobility problems, what was safe and what was dangerous for her to do. Whether this might kill her. And all we got was an unwanted window into the bigotry of someone who styled himself a doctor.