Tag Archive: Kids

I want to spare another family from this life altering trauma

My story is truly one of heartbreak and pain. I recently lost my 14 year old son to aortic rupture caused by vascular Ehlers-Danlos syndrome, and that’s how I received my diagnosis. By this time I did already have two siblings diagnosed with vEDS, so we already knew there was a possibility of having it. […]
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Baya is Zebra Strong!

This zebra’s name is Baya. She is passionate, strong and confident and and does amazing things. She is a swimmer, although you can imagine with hypermobile EDS the worry is there that something will happen. While she is super flexible, acid reflux is her huge hurdle. She has struggled since she was born with reflux. […]
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I’m thankful for my early diagnosis

My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has it too. We knew something was up when at 6 months, before I was crawling or even rolling around, my arms were covered in bruises. […]
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Managing my insecurities

My name is Rachel and I have classical EDS (cEDS). I’ve never been open to anyone about my insecurities about having EDS. I’ve told others that I have it, and explained what it is in a very objective way, but I never dwelt deeper than that. Searching ‘EDS’ in Instagram was shocking to find so […]
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Learning how to adapt to life with cEDS

By Liz H. My daughter, Frances, was diagnosed with cEDS when she was almost 2 years old. We feel lucky that we were able to obtain a diagnosis so young, knowing that many EDS patients spend much of their lives trying to figure it out. It’s possible that we also would have been in the […]
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AN 8-YEAR-OLD FORCE OF NATURE

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.
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