Tag Archive: Kids
After 30 years of the unknown, I finally got an answer. One night my husband was watching Ninja Warrior and heard a story of a woman with this rare condition. This was after years of going to doctors and him coming home poking me to see if certain things hurt when he finally got the […] View page
I had spent most of my life so far being very active. I lived to help others. I cared for the elderly, children and disabled. I taught gymnastics for 20 years. Now the tables are turned. It’s me who needs the care and I struggle with this new role. It feels foreign to me, this […] View page
My daughter’s previous rehabilitation doctor told us that the same program applies to hEDS as to fibromyalgia. “The pain is between the ears. We’re going to fool you and reset your brain. Your brain sends the wrong signals and we will treat that.” Because I did not agree with the rehabilitation doctor, I was almost […] View page
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. […] View page
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. […] View page
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. […] View page
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 […] View page
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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 […] View page
By Emma S. I was in 8th grade when I first noticed that my pain—my body—is different. During after-school dance, I was coming out of a handstand and my foot got caught in my pant leg. I fell on my chest. Everyone came over to ask me if I was OK. I said, “It’s only […] View page
