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What 'American Ninja Warrior' Didn't Say About Ehlers-Danlos Syndrome

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Last night, America watched as Enedina Stanger took to “America Ninja Warrior’s” course as a woman with Ehlers-Danlos syndrome. Stanger first gained attention in 2015 when her husband competed on the show. Throughout his time as a competitor, her husband worked to garner awareness for EDS patients everywhere. While that awareness was well-received by the EDS community, Enedina’s participation has been slightly more contentious.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

When her husband first participated in “America Ninja Warrior” in 2015, Enedina used a wheelchair due to her EDS. When he competed again in 2017, he shared that she was no longer using the wheelchair due to diet and exercise. Last night, she appeared relatively healthy as she competed on the course. She fell and was eliminated a few minutes into the course.

As an EDS patient myself, watching the media coverage on this issue has been bittersweet. To see Enedina go from using a wheelchair to participating on the course is quite incredible. While my EDS has not progressed to the point of warranting a wheelchair, seeing this improvement in another patient gives me hope. I have hope that should I ever need to use a wheelchair, it could be temporary as well. I have hope that as much as my health may fluctuate, I will be able to slowly recover from the downturns as Enedina did. I have hope that we are moving closer to better treatment options.

Yet, on the other hand, I have concern for how the media may spin this event. As a teenager who is constantly ridiculed for the impossibility that my illness is real, I worry that this incredible transformation could be used against me. I imagine that at school on a bad health day, someone may say, “Well, I see you aren’t doing well, but that woman on ‘America Ninja Warrior’ sucked it up and got a lot better. You should try to be more positive.”

The problem with these statements is that Enedina’s recovery did not come from positivity — not solely at least. Her recovery came from hard work, exercise, diet, and a host of other factors that may not yet be public knowledge yet, such as new medications, second opinions, or other medical treatments in conjunction with lifestyle changes.

However, when this is portrayed in the media, I do not have much faith that it will be labeled anything short of a “miracle.” For fellow EDS patients, we will be asked why we cannot just change our diet or go to the gym; it’s not that simple. For Enedina, her hard work may be belittled and glossed over as a “miracle” or simple transition; she worked hard to recover like she did. And by the way — using a wheelchair doesn’t have to be tragic! It’s certainly possible to live a happy life and also use a wheelchair, and no one is a “failure” if they need one.

So, to Enedina, thank you for your awareness work. From your husband’s advocacy years ago, to your lobbying efforts in 2016, to your competition last night, you always push forward for necessary awareness for EDS. I am so happy for you, as a fellow EDS patient, that you are doing better, and I completely understand the amazing feeling of getting health issues under control, so I am overjoyed for you. Fellow EDSers may direct their anger at you should they be asked about your recovery or compared to you, but that is not your fault. You know your limits, and have raised so much awareness, and for that, we should all be thankful.

To reporters covering the issue, please make sure you get the full side of the story. First off, EDS is a spectrum disorder with ups and downs. So, where Enedina may have been able to recover in this fashion, the same treatments do not work for everyone, and all EDS patients have different limits. On the flipside of that, it is important not to stray from the medical side of her recovery. To spin this story as a “miracle” would not only harm EDS patients everywhere, but would belittle the hard work Enedina put in to get to where she was today.

Finally, to EDS patients, consider every side to this story before forming an opinion. We all know, better than anyone, that EDS is a spectrum disorder that fluctuates in severity, so please do not target Enedina for participating in the show. We may have to deal with the aftermath of the story that the media spun, but if anything, Enedina helped us in raising awareness. For that, I think we should all be thankful.

Originally published: July 10, 2018
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