What I want you to know about Ehlers-Danlos Syndrome

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Mallory.

I'm Mallory, I'm 16, and I have Ehlers-Danlos Syndrome. Those of you who do not know what Ehlers-Danlos is, it means the collagen in my bones and connective tissue, the little I have, does not work the right way, causing joints throughout my body to fall out of place. So I have pretty much dislocated almost everywhere in my body. Let me start from the beginning.

I have played volleyball and basketball ALL of my life. Going into my 9th grade year I made the JV volleyball team for my high school! I was so excited, and later that year I made my club volleyball team, and basketball team for my high school, as well. I've always had problems with my joints but always thought it was normal.

I have always dislocated joints in my body but thought everyone could. In January, while playing a basketball game I cracked a few ribs and went to see an orthopedic surgeon. He looked at my shoulders and was completely taken aback by how loose my shoulder was. He said I needed a corrective surgery as soon as possible. April 9th, 2014, was the first date. Second surgery on the same shoulder from a re-injury, was on June 3rd, 2014. My third surgery was on September 11, 2014, on my left shoulder. 

I have a hip replacement coming up that was supposed to be January 14th, 2015, being currently rescheduled. I also have my right side of ribs higher than the other because they are currently dislocated and doctors can't relocate them. Also I have dislocated my knees, hips, wrists, thumbs, ankles, vertebrae, and jaw. It isn't like being double jointed, it is excruciating
pain, and gets to the the point where I cannot walk for days. 

My shoulders are not healed and I haven't been able to play sports for a year - the one thing I love -but you have to get over it. Hope for the best to happen one day. If you know someone who has EDS be there for them, don't thing they are complaining, or being a baby. They are in ACTUAL AND INTENSE PAIN. I have many friends who will not take it serious and will get mad at me for canceling because I can't get out of bed. I hope to be healed soon and pray physical therapy can help me to ensure no more surgeries are needed. For all the people who have EDS there is always hope for the future just surround yourself with people to support you and that love you and I hope I was able to inform people on the seriousness of this syndrome. This is my story.

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