On August 16th, 2018 I met with a Geneticist, Dr. Tinkle, at Peyton Manning’s Children’s Hospital. I’ll admit, the questions he asked and the tone in which he asked them gave both my dad and me the vibe that he felt like I was a hypochondriac… but then he did a very thorough exam.
He had me stand in front of him with my feet together facing him. He had me turn away from him with my feet together. He had me turn to the side with my feet together. During this part of the exam he was looking to see if my knees extend more than 10 degrees.
And then he had me bend forward as far as I could, keeping my legs straight, and touch the floor with my palms flat on the floor.
Then he asked to see each of my hands and he bent my thumbs down and touched them to my forearms.
He bent my pinkies back to see if the top knuckles could bend back in a 90-degree angle and they did.
He looked at my elbows to see if they extended further than they should.
Then he examined my wrists because we had mentioned that I have really struggled with them dislocating…and he accidentally dislocated my right wrist during his exam. At which point he sincerely apologized
After he finished his exam he allowed me to return to my seat and said that while he didn’t have any genetic tests to perform, I had a connective tissue disease called Ehlers-Danlos Syndrome (EDS). He then said something that sums up my experience with the medical industry over the last three years and something I don’t think I will ever forget…
“Unfortunately, due to the complexity of your case, it appears that despite your best efforts…you don’t have the right medical professionals on your team… these so-called professionals have even treated you as a hot potato. It appears as if a punt from your primary care physician is what landed you here in my office today. So, if you don’t mind, I am going to slowly start replacing some of your team with professionals who are more equipped to handle your care.”
I could have cried. Not only did I not expect it… but someone heard EVERYTHING I said, and the things I didn’t… and is providing the care that I have needed for the last three years.
EDS is probably something I have had all my life and I will continue to live with it for the rest of my life… It explains the joint issues I had as young as middle school, but has become a lot more prominent since I became ill in 2015. Unfortunately, it is incurable… but we are going to try physical therapy to strengthen the muscles around my joints in an attempt to prevent future subluxations and dislocations.
Bumpy Back Roads 