When I first got diagnosed with Ehlers Danlos Syndrome I had absolutely no idea what it was. I remember I was 14 years old, a freshmen in high school, and I had come to see a genetics doctor after experiencing three sports seasons of consistent injury. In middle school I had played basketball and volleyball, always somehow managing to break a finger or dislocate a shoulder what seemed like once a week. When I had finally arrived in high school, I decided to stick with volleyball, something that I thought would keep me in shape, get me friends, and keep my high school status up to par. I soon found myself with none of these things, as I endured a long season of constant injury which lead me to major anxiety, loneliness, physical pain, and a disconnection I felt with the people around me. People on my team began to call me a hypochondriac, because it just did not seem possible that someone could be injured that much in one season. On top of the injuries and insecurities due to the people around me, I dealt with a variety of other health issues like stomach problems and a low immune system. Realizing something was not quite normal about my constant battle with injury, my parents began to search for answers. I went to a plethora of doctors looking for things such as bone brittle disease and arthritis, neither of which seemed to be an explanation for my fragile body. My medical case was chalked up to be unlucky, a series of unfortunate events, even deemed a random coincidence. Just when I started to believe I would never find an explanation, a family friend recommended I see a geneticist. Ah ha. After going through my medical history and examining my joints, the doctor diagnosed me with Ehlers Danlos Syndrome, a genetic connective tissue disorder due to lack of collagen in the body. I had received so many injuries because my joints did not possess the tissue needed to protect them from overextending. A big part of my case of EDS is hypermobility, an increase in the range of motion of parts of my body. It made sense, the doctor explained, that a high impact sport like volleyball would be a nightmare for someone with my condition as the contact with the ball, the constant bending forward, and the overextension of arms causes extreme amounts of stress on the joints. The doctor also explained that a lot of people go their entire lives without being diagnosed with EDS, leaving them to be labeled as hypochondriacs, dramatic, or even mentally ill. I knew I was blessed that my case was discovered early; people who don't get diagnosed until later in life find many complications with their bodies due to the lack of knowledge in earlier years that they should be extremely careful with their bodies. While I was relieved that there was finally an explanation for my condition, I was devastated to find out that volleyball, or really any sport, was an unfit activity for someone like me to be participating in. At this point in life I was determined to beat the odds, and work really hard to make volleyball work. I felt that volleyball "defined me" in a way, and without it I would lose a part of my identity. I wasn't amazing at it, and I knew that, but I also knew when I worked hard at something I could get better and better everyday. It seemed so unfair that all of the hard work I had put in to make the team would leave me with one season of mostly bench sitting and a lifetime of playing little to none. I weighed my options and decided to try for spring season, one that was abruptly cut short after a dislocated thumb in my very first game. I got very upset with God, mad that He would do something like this to someone who prayed to Him every night and always tried to do the right thing. One night as I was crying and my mom was consoling me I said, "mom, why is God doing this to me?" In that moment she told me something that has always stuck with me, "Gabrielle, I don't know why you are going through this but what I do know is that God has a plan."
If you or someone you know is experiencing symptoms such as joint instability, chronic musculoskeletal pain, frequent joint dislocations and subluxations, skin abnormalities, or if you would like to donate to help fund EDS research, please visit http://www.ednf.org.
If you or someone you know is experiencing symptoms such as joint instability, chronic musculoskeletal pain, frequent joint dislocations and subluxations, skin abnormalities, or if you would like to donate to help fund EDS research, please visit http://www.ednf.org.