Every day is a struggle, but we will all get through it together

Posted February 13, 2020

Hi, my name is Emma and this is my story of living with EDS. 

Growing up I had no idea why my legs felt the way they did. My mom has multiple sclerosis and one of her symptoms is that her legs are very painful, so when I was little I would tell my parents that I thought I had MS too because my legs hurt. 

Of course, my parents thought that I was just trying to get attention as any parents would, but as I got a little older and the pain started getting worse they realized that I was telling the truth. We thought that I just had severe growing pains (because I am pretty tall), but as the pain continued to get worse we knew that it was something different. 

We went to many doctors but no-one could tell me what was wrong until I was finally referred to Riley Children’s Hospital. There they did many tests and asked many questions, and then they sat my father and me down and told me that I had hypermobile Ehlers-Danlos syndrome (hEDS). Of course, we didn’t know what that was, and honestly, I don’t think they did either. 

I have found out pretty much everything I know about my disease from researching and personal experience. I am now 17 and living my life to the fullest. I am in constant pain and may not be able to do what all the other kids can, but I try to make the best of it. EDS has caused me to sprain my neck once, and strain it another time, my hips constantly dislocate, my jaw dislocates a lot, my thumbs dislocate, I’ve definitely fractured a few bones. I get very fatigued very easily, and of course, the chronic pain is there too. 

Every day is a struggle, but I will get through it and we will all get through it together!

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