Begin at the beginning

I was always told when telling something that I should begin at the beginning. So I shall.

All this started when I was about 12. I was jumping on a trampoline with some friends and playing Follow the Leader-one person would do a trick and the other two tried to copy it. My tricks were dinky, easy stuff almost anyone could do, so probably on my third turn or so, they told me not to do something wimpy this time. I, of course, said that I wouldn't, and bounced, stalling for time. Then it hit me! I would come down from a jump on my right leg and bounce back up, going into a flip. Instead, I landed on my right leg, and my knee buckled backwards. It's not supposed to do that. I don't remember a lot of this...I felt it go backwards and incredibly intense pain. I crumpled, bawling like a baby and clutching my leg in agony. My friends were very concerned-one was a boy a year younger than me, the other a girl a couple months older than me. I barely managed to tell the boy that he needed to go get his older sister-I knew I couldn't walk, and she was the only one who could carry me. So she came running over with him (I kind of wonder, now, what he told her. "Jessica got hurt! She's crying!" or just "come quick!!") and got me into their house. Me and the other girl had slept over the night before and our moms hadn't come to pick us up.

I faked being okay very well-I figured it was just sore, and my mom would want to take me to a doctor, which I was sure I didn't need. Also, I wanted to sleep over that night and she wouldn't let me if I had gotten seriously hurt. So I said it was nothing, and kept saying that for a couple of days until the pain became too much and I admitted to her that it was worse than I had told her and I could hardly use it. She took me to the Urgent Care Clinic, who gave me a knee immobilizer and crutches. That was it. No physical therapy-although looking back, physical therapy could very well have made it worse.

The knee kept hurting on and off through the years. I went back on crutches a few times, here and there, and the knee was weather-wise. It ached a lot, as did my other knee, but I figured I had injured the one and was hurting the other by using it to compensate, so that was normal, right? When I was about 15, it stopped giving me problems, and that lasted a couple years, until just before my 17th birthday when I jumped from a swing and landed badly.

Now I got the physical therapy for a few months, which helped out quite a bit. I was fine and saw no reason to be concerned until New Year's Day, 2011. I had been problem-free for over a year at this point-I was about to turn 19. I stepped out of my room and my right knee buckled, and I nearly crumpled. It wasn't as bad as back on the trampoline, but it was fairly severe pain and it lasted a while. I finally went to my general doctor, who referred me to an orthopedist (sports medicine doctor).

In early February of 2011, I first heard of Ehlers-Danlos Syndrome, or EDS. The orthopedic doctor looked at my knees, then asked me to bend my thumb down to touch my forearm. I couldn't understand why, but did so, with no difficulty. Then he pulled at the skin on the back of my hand and pointed out that it felt loose. And then he asked if I had ever heard of something called Ehlers-Danlos Syndrome.

EDS is a connective tissue disorder, caused by the body making defective collagen. It would be like trying to glue something together using water. In most people, their glue works fine, but in an EDS patient, it doesn't. And collagen is everywhere-in the heart, veins, most internal organs, along with skin, ligaments and tendons-the things that should have kept my knee in place when I jumped on that trampoline. I'm considered lucky-if I wasn't stretchy, I would most likely have snapped something.

After researching EDS, dozens of things began to make sense.
When I was about thirteen, I stepped on a lid from a can of cat food that our dog had managed to dig out of the trash. I felt absolutely nothing and...I try not to think what would have happened if my mom hadn't noticed me bleeding as I walked past her. It was late, and I was playing with my brother. If she had been asleep, or in her room, or almost anything...it's terrifying to realize that I might have very well just gone to sleep and bled to death. It was a huge gash in the instep of my right foot. EDS patients often have skins that tears easily. A stitch tore out when they were fixing it, and the stitches ended up being left in for twice what we expected, because they were healing slowly. Poor wound healing is another EDS marker.
When I was twelve (just about to turn thirteen) (yes, I was very accident-prone!), I was playing around on a couch. I crouched on the hard wooden arm of the couch and leaned about a foot or two forward, to grab onto the desk across from me with my hands. Then I carefully scooted my left foot to the desk and let go with my hands, to turn around and move back to the couch. I was in between the two when I lost my balance and fell, ending up with a broken arm. The problem was, I never noticed I was losing my balance. I had no chance to correct it. It wasn't something where I realized I was falling-one moment I was leaning towards the couch, the next I was lying in front of the bookcase on the floor, cradling my arm. Proprioception is the sense of where one's body is...it's like being able to understand how much space your body occupies, and where it is. It's something you take for granted. For example, hold your hands about shoulder-width apart, and spread your fingers. Now close your eyes and try to make your fingertips touch. As soon as your hands touch, stop, open your eyes, and check. I usually end up with my hands interlinked, because my fingers missed each other spectacularly. If I close my eyes and someone moves one of my hands somewhere and asks me to find it with the other hand, I can't. I once had my foot resting on a rail of my bunk bed, and decided to put my other foot on that rail. I only got both feet together by sliding the loose foot along each rail. I couldn't have told you where it was. Issues with proprioception go along with EDS.
My purple hands and feet were caused by my veins expanding (stretchiness, collagen in the veins) and blood pooling there. My dizziness when I stand up from sitting or lying down, or even from moving when I've been standing, is called POTS, and means that when the blood pooled in my legs and arms, my heart rate and blood pressure dropped significantly. When I move, my heart rate and bp both skyrocket to get blood to the brain, and if they don't do it quickly enough, then I get dizzy. My clumsiness that I've been teased over for years is when the proprioception is glitchy and I whack a shoulder or hip or knee or almost anything on a door, table, shoe, etc because I didn't realize my body was there.

I got my EDS diagnosis on February 9th, from a geneticist in Tennessee, and I am infinitely grateful to him. I am already getting onto a pain regimen, and now have a name and a diagnosed disorder to get accommodations for college. And I am one of the lucky ones. There are dozens of people who don't get diagnosed within a year of hearing of EDS, like I did, and there are hundreds of people who don't get diagnosed until much later in life...I'm not even 20 yet. But still, sometimes, I want to rant and cry. This will essentially be my diary-as things happen related to my EDS, they'll come here. Jessica Watts is not my real name, nor will I be posting my real name, because I want anonymity. But I'll go by Jessica on here, and try to give anyone reading a window into how my EDS life goes.