Posted June 20, 2018

by Gillian M. (with a little help from Mom)

I am an 8-year-old bundle of energy and there is nothing I won’t try! My mom calls me “a force of nature on two legs!” I love to run, jump, and spin! I just love to be in motion and the higher and faster the better! I love all animals but I especially love giraffes. I love school and am a big fan of birthday parties. In fact, I consider myself a ‘cake-a-terian’! And, I happen to be the limbo champion of the elementary school set.

I also have hypermobile Ehlers-Danlos syndrome. I don’t really understand what that means yet except I seem to go to the doctors more often than my friends. I fall down – a lot! Sometimes, even when I’m standing still. I also get a lot of bruises. I’ve had the *same* bruises on my shins since I was a toddler. They might go away for a day or two but they *always* come back. And, now I get them around my knees, too. It seems like I’ve always got a bruise somewhere.

It was those bruises, and my constant falling, that were the first things my mom expressed concern about to my pediatrician. But, everything was shrugged off because of my age and high activity level. Everyone just kind of let it go for a few years. When I turned six, though, and I was still bruising and falling for no apparent reason it couldn’t be so easily explained away by my age or activity levels.

So, my mom brought me to get my eyes and inner ears checked in case it was poor vision or balance that was causing me to fall but there weren’t any issues found that would explain what was going on. In the meantime, I had discovered some really neat things that I could do that none of my friends could do! Like, I can make just about everywhere on my body make a popping sound! I can also twist my limbs in ways that make my mom and my friends cringe! Because of this, and since we have cousins overseas with Ehlers-Danlos, my mom started thinking I might have it, too, so she called and made an appointment for me to be evaluated. We had to wait a really long time for an appointment. It was almost 9 months later before they could see us! And when they did, I was diagnosed with hEDS at the age of 7. But, that was almost five years after mommy and daddy saw things that “just didn’t seem right”.

The doctors told my mom and dad that they could either proactively limit my activities in order to avoid injuries altogether, or, let me do the sports and activities I want since it is impossible to know, at this point, to what extent I will be affected.

There’s no slowing down this two-legged force of nature! So, I tried cheerleading and I loved it! But, I stopped after just a few weeks. I was in pain from head to toe after practices and I just couldn’t take it. Anyone who knows me knows I don’t give up but I just couldn’t take that pain.

When cheerleading didn’t work out, I signed up for cross-country running at school. And I absolutely love it! But, when I run fast, “my heart feels like I have two hearts and I can’t get the right air.” So, we went back to yet another new doctor so I could get some tests done on my heart. So far, everything seems to be okay but we have to watch it pretty closely.

Even when I’m not being active, I get pain in my body. Lately, it is under my ribs. I don’t understand why it’s there or what’s causing it. And, I always seem to be in pain somewhere. I used to think it was okay because maybe, hopefully, they were ‘growing pains’. But, that doesn’t seem to be the case, at all!

I’m pretty tiny compared to my friends. I want to be big and tall like they are but I just don’t seem to grow like everyone else. And, I’m skinny. My mom and dad worry about me not eating enough but I really do eat as much as I can when I’m hungry. I love food! But I just can’t eat a lot. So now, I also take vitamins and drink protein shakes but I wish I didn’t have to.

I listen to what the doctors say but none of it is “real” to me right now. I asked my mom what it means to dislocate something. I didn’t like how it sounded at all but it’s all just words anyway. But, I do think I’m starting to understand my body a bit better. Even if just a little. But, right now, all I want is to have fun, eat cake, and be an 8 year old “Limbo Queen”. So, until my body tells me otherwise, I’ll just keep saying “Sign me up!” and “Let me at it!” when each opportunity to have fun comes along!


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this ‘#MyEDS/#MyHSD’ anthology is published “as-is,” with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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