Ten Children Describe What It's Like To Live With Ehlers-Danlos Syndrome
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I have often asked myself "what would I have been able to communicate as a child if I was educated about EDS at a young age? would it have changed my outcome now? what if doctors were able to pick up on the bruises and see the connections between all of my falls and sprains and surgeries.
Late one night I was looking into current Ehlers-Danlos Research, and my browser brought me to a site I immediately wanted to bite into. The Mighty is a easy-to-navigate, well-proportioned and beautifully designed site that dedictes it's resources to,
"creating a safe platform for our community to tell their stories, connect with others and raise support for the causes they believe in. We are stronger when we face adversity together, and we know it. We’ve also partnered with over 200 nonprofit allies to deliver their excellent resources to our community."
Because I have been asking myself these introspective questions about my early childhood "signs and symptoms", I was immediately drawn to an article written and gathered by Hannah Wingert on the Mighty. She asked several children to describe what it is like living with EDS, and I have shared answers from children I can relate to from my past experience with EDS.
Anonymous, 7 years old – “I feel stretchier. It makes me feel like I’m the special kid. It’s because I have something that other people don’t and that’s why I’m feeling that way. It affects, like, sometimes I try to run and then part of my body hurts and then I stop.”
Nicholas, 11 years old (hEDS) – “Awkward and painful.”
Dylynn, 11 years old – “I hate being clumsy, and I hate the knee braces, but I love the aqua therapy.”
Brandi, 6 years old (hEDS) – “It’s not bad. When my hands and feet are sleepy (numb) is what I hate the most. Oh, and my legs. They stay tired a lot.”
Jessica, 4 years old (cEDS) – “It’s too many doctors. I hate my boots (AFO braces). I’m tired of getting hurt.”
Kyler, 7 years old (cEDS) – “It’s pain. I want to run with my friends and play sports. But it hurts.”
Nikolas, 9 years old (hEDS) – “It hurts me. I love to draw, but it hurts my hands. I hate when bits go the wrong way, like my elbows and feet. I hate when my shoulders won’t move.”
Mathew, 7 years old (hEDS) – “I hate that it’s made me stretched (marfanoid habitus) and that I bruise and get nosebleeds all the time.”
Jack, 6 years old (hEDS) – “I don’t like my wobbly ankles and wrists and having no teeth like my friends, but I like showing my teachers how I can pick my nose with my tongue.”
Luke, 4 years old (hEDS) – “ I don’t like wearing my boots (braces) with shorts. I can’t hold my pencils like my friends at school, too.”
Abigail, 8 years old (hEDS with vascular crossover)– “EDS makes me feel unique. It feels like I am hiding a secret because I don’t really tell people that I have EDS. People just don’t ask, so I don’t tell. Sometimes I am sad when I can’t play or do other activities that my friends do.”
Dax, 7 years old (cEDS) – “It feels very sad. l have to be sick every single day of my life. I feel like I have the flu every day. It feels like stabbing.”
Katie (my daughter), 9 years old (hEDS) – “I’m different than my classmates. I like EDS because my class likes to see what I can do (um, we’re going to have to have a talk about this!). I don’t like that I hurt all over somedays.”
