What Happened After My Illness Was Featured on 'American Ninja Warrior'


In 2015, Michael Stanger of Utah was a contestant on “American Ninja Warrior.” His story was compelling as he was competing for his wife, Enedina, who has Ehlers-Danlos syndrome. At the time of airing, Enedina was using a wheelchair due to EDS.

In July of 2017, Michael went back on “American Ninja Warrior” and his wife Enedina was out of her chair and doing great. She credits diet and exercise for her two-year change in status.

This is amazing. Don’t get me wrong, I’m ecstatic for Enedina, but as someone with EDS, I have to address some of the results of this episode.

 

I should preface all of this by saying that I love that the words “Ehlers-Danlos” are being said on TV! I love that more people are becoming aware and learning about this condition as it’s been so far from the forefront for so long. TV shows like this one and a recent episode of “Grey’s Anatomy” are a huge leap for those of us who have EDS and have to spell the condition several times to doctors and medical professionals who should have heard of it by now.

I should also note that it’s never made clear what type of EDS Enedina has. I have hypermobility type, which causes chronic dislocations among other issues. I dislocate between seven and 30 times a week. The small ones I can handle (toes, thumbs, etc.) but the big ones (like my knees and hips) take more out of me.

Since the airing of the show last week I’ve been beyond lucky to have friends and family reach out and ask if I saw the episode. The first thing they always say is “Hey, I saw someone on TV with what you have!” I love, love, love the enthusiasm when they realize they recognize my disorder.

But because of her transformation, the next part is hard. “Did you see she’s better?” Well yes, but no. “Did you see it’s because of diet and exercise?” “Did you notice her husband does (this product) and she’s on (this regimen) that I happen to sell?” “Can I help you get better too?” Ugh, thanks but no thanks. Here’s why. Let’s address this.

First, it’s important to note that there are several different types of EDS. Our mascot is the zebra. No two zebras have the same stripes. Each one is different. The same is true for EDS patients. No two are alike. Yes, we share a common thread in that our collagen is defective, but we aren’t the same. I dislocate but I have EDS friends who have heart issues, skin issues, etc. No two are alike. We are each unique. This is part of the reason it’s so hard to diagnose and treat us.

Second, she’s not cured. This is also really important. She has a much better quality of life, I’m sure, but she’s not cured. She’s found something that works to mitigate her issues, but she’s not fixed. Diet isn’t going to fix my DNA. Exercise isn’t going to fix my broken collagen. There are
lots of EDS patients who find that going gluten-free or dairy-free is helpful for them. For me, I cut way back on my sugar intake. That helps me. Exercise is tricky. For some, exercise is necessary, for others it’s impossible. I was doing physical therapy for a while and it helped, but then I dislocated and damaged my already injured knee. No physical therapist will touch me and help with anything until it’s fixed. I’ve had three surgeries on this knee already so I’m at a standstill. We are hoping another surgery will help or fix the issue but for now I’m back to almost zero exercise. And yes, I feel a difference when I don’t exercise, but it isn’t for a lack of wanting – I physically can’t right now and that’s OK.

Lastly, I heard her husband does a popular exercise/nutritional program. That’s awesome, for them. I appreciate that my friends who do the same saw this and think it might help me. I absolutely love that you think of me. But that’s not for me. I have a team of doctors helping me. I have supplements based on my needs. When and if my team feels something like this would help me, I promise I’ll reach out. I know what you do and I respect the heck out of you but please know right now that isn’t going to fix my DNA and I am doing OK with where I’m at. So thank you, but it’s not helpful.

I wish all the best to Michael and Enedina and am beyond grateful to yet another network for portraying someone with my illness. And again, I appreciate how much I must mean to you when you email, text, mention or message that you saw this and thought of me. I love the awareness! But please know, I’m not her. I’m glad this worked for her but you don’t know her whole story any more than you know mine, so please stop the message after you say “I saw EDS on TV.”

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