Month: January 2011

Ehlers-Danlos Backstory: Part 1

I plan on using this blog to talk about more personal issues in 2011, and I thought it would be helpful to give a backstory on some of the important things in my life — my history with Ehlers-Danlos Syndrome, my struggles with weight, dating and other family topics.

Dislocations and the school years
I was born with six fingers on each hand and six toes on each foot. They “removed” the extra fingers at birth but wanted to give my feet more time to develop to see what would happen with my feet. When I was five, they removed my extra toes. After that, I was a really clumsy kid and no one really could tell me why. I believe now that I was having minor subluxations or dislocations from the beginning.

When I was 8, I finally convinced my mom and step-dad to enroll me in youth soccer. It was great, but I started coming home from practice and my legs would ache. Sometimes, when I was running, I would fall down for no real reason and my legs – specifically my knees – would hurt a lot. When my mom initially called our pediatrician, they just thought it was growing pains. I had an upcoming appointment with my podiatrist, and we decided to check with him. He felt it was worthwhile to do some diagnostic tests and take some x-rays and that’s when we found out two major problems – a) I had really loose ligaments around my knees and b) my knees were shaped incorrectly and I had what most people referred to as a “floating kneecap”.

I was put on restrictions after that to not run or jump and this is how I lived through elementary school, junior high and high school. I was teased a lot about it, largely because it was hard to explain and didn’t make a lot of sense. I would have about a dislocation a week on either knee, but within a day or two, my knee would feel good enough to walk on again. I’m sure students that I went to class with thought that I was faking things, and since I didn’t have any real diagnosis, it was hard to explain.

Even though I had other pain, there was never any reason to think that the problem was anything more than just having bad knees. In high school, I swam and that seemed to help, but it also hurt. I couldn’t get a great start off of the blocks and sometimes when I was pushing away from the wall, my knees would slip out of joint. I wasn’t very competitive, but I felt like I was doing something.

During high school, I had two dislocations that were “memorable” and should have been a clue to something else. One occurred while I was at church camp. I had been swimming in a lake and my knee dislocated in the water. Unlike most times when my knee would have problems and then go back in to place, because I was in the water, it didn’t happen this time. And, because I was camping and not really in a place that I could rest (or have access to my brace), my knee really never settled down like it usually would. By the time I got home, I still had bad swelling and “water on the knee”. My mom wasn’t happy and neither was my doctor. I basically didn’t go anywhere for a week and just rested my knee and things settled down. The only other time that my knee didn’t go back in to place was right before my junior year in high school. I tripped on a cement block in a parking lot and my knee locked out of socket. It hurt worse than anything I had ever experienced in the past. It was the only time I’ve ever had to go to the doctor to get my kneecap put back in place.

Up next: Ehlers-Danlos and the college years ….