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When I Asked 25 Kids With Ehlers-Danlos Syndrome What Their Lives Are Like

At least three of my four kids have Ehlers-Danlos syndrome (EDS), which they inherited from me. Davy (3) and Nano (7) don’t really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it.

Kids are supposed to be able to run and play. They shouldn’t have to deal with chronic pain and fatigue. They shouldn’t have to spend their childhoods at doctors’ offices, wearing braces and explaining random bruises.

But, that’s not how things always work. I interviewed 25 kids who have EDS to see what it’s really like to be a child or young person with the disorder.

Averie, 10 years old (hEDS) – “The hardest part is telling other kids that I can’t do certain things, like play on the monkey bars, or do everything that my classmates are doing in gym class. EDS hurts a lot. It’s frustrating that you can’t do as much as your friends, and that postural orthostatic tachycardia syndrome (POTS) is really frustrating because I just have to explain myself more when I’m getting up more slowly than others, and having to draw attention to myself.”

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.”

Anonymous, 6 years old – “I just feel like I’m extra good at gymnastics, and I wonder why other kids don’t have their knees ‘fall off’ like mine.”

Kyle, 9 years old (hEDS) – “It doesn’t really bother me, it just makes me who I am. The only thing I really hate is when I go dizzy and fall.”

Harriet, 8 years old (hEDS) – “Unhappy. I want to be normal. It’s horrible being in constant pain and it’s very unfair. I shouldn’t have to deal with all this at such a young age. It is spoiling my childhood.”

Nicholas, 11 years old (hEDS) – “Awkward and painful.”

Charlotte, 4 years old (hEDS) – “I fall over loads, and I’m always tired. I wish I could run about like my friends without pain.”

Nicole, 17 years old (hEDS) – “I hate life. I’m constantly in pain, and I want to be like my friends. I hate that no one believes me (apart from family, close friends, and Professor Grahame) and I want to be able to work and earn money like my friends.”

Dylynn, 11 years old – “I hate being clumsy, and I hate the knee braces, but I love the aqua therapy.”

Kaitlyn, 16 years old (hEDS) –  “I’m lonely and in pain, nauseous, weak, extremely fatigued and foggy headed, dizzy and feel like passing out. I haven’t been to school in three months. I’m tired of it all!”

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.”

Sebastian, 5 years old (hEDS) – “I don’t like it. I wish I didn’t have pain. It’s not fun, and my medicine is gross.” You can follow Sebastian’s journey at My Sweet Zebras.

Jack, 7 years old (hEDS) – “I don’t like that I’m so different and can’t keep up with my class. It makes them be mean to me sometimes because I’m not as fast as them and I can’t play football or ride a bike like everyone else. I don’t like being in pain and tired all the time or having to take medicine every day, especially when it doesn’t work.”

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.”

Simara, 12 years old (hEDS) – “I wish I didn’t have EDS, Mummy. Make it go away. I hate having to wear my braces. The kids ask me too many questions [about] why I have to wear them. I hate my EDS.”

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. I can’t walk far and running really hurts. I hate sports but my friends like it so I feel left out.”

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 fall over a lot which is OK, but not when my face gets cut. 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.”

Kyler, 10 years old (cEDS with vascular crossover) – “I don’t like when people stare at me all the time (he uses forearm crutches), or that people don’t believe me (that he has EDS). I miss being a ‘normal’ kid. But I know God made me this way for a reason.”

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.”

I also talked to Kathy, whose 12-year-old daughter, Ellen, has hEDS with a vascular crossover. Here’s what she had to say:

“Looking at the photos of Ellen… she looks healthy, happy and unaffected by her illness. The other day, she opened two packages (gifts), posed for photos and then was suddenly ‘done.’ Shortly after I took the photos, Ellen had a complete emotional meltdown. She was sobbing about how badly her body hurts and how she can not get away from the pain. It is frustrating when moving so little can cause her such distress. I, as her parent, feel helpless and heartbroken about this.

As a parent, we want to help our children any way we can. I have no idea how I can do that. I can’t take away the pain. I struggle to help her find ‘comfort.’ She agreed to take a bath and just relax in the tub for awhile. I could tell she skipped her pain meds as she was completely, mentally undone. I let her sleep in that day, and it completely slipped my mind. Obviously the Gabapentin is working. I just don’t think it is at the level it needs to be quite yet. My heart breaks for her.

This type of pain for a 12-year-old is difficult to describe, understand or help. I have watched my child crash and be crushed by the weight of the pain that comes from EDS. I have watched her miss school, day after day after month after year. Her friends continue to live life. She doesn’t know how to find her place with them anymore. The anxiety and isolation are horrific. It is more normal for her to sit in a doctor’s office and have a relationship with her providers than to sit in a classroom with friends. That speaks volumes to what life with EDS is like. There isn’t a day that she is not struggling. Not a day where her monstrous pain doesn’t rear its head. Not a day she doesn’t fight tears and sadness for everything she is missing out on.

When I asked Ellen how EDS has affected her life… She replied ‘what life.’ Heartbreaking.”

You can follow Ellen’s journey at Empowering Ellen.

So, right there are 25 reasons why I’m working so hard to raise awareness and research funds for Ehlers Danlos Syndrome. Because these kids deserve it.

You can find Hannah raising awareness for EDS at Sunshine and Spoons.

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Thinkstock photo by Ingram Publishing

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