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Why I Believe Doctors Need to Be Better Educated on Ehlers-Danlos

Ehlers-Danlos syndrome is a genetic illness that is widely considered to be rare. However, there are many of us that do not, in fact, consider the illness as rare as many may claim. Those of us who do not consider Ehlers-Danlos syndrome to be rare believe it is under-diagnosed due to the lack of awareness of the illness itself. Ehlers-Danlos syndrome is a condition where the collagen in the body is faulty, so anything having to do with collagen is fair game to the illness. You have collagen mainly in your skin, tendons and ligaments. Tendons hold your muscles to your bones and tendons hold your bones together. Your skin holds everything… just in general. Hah.

So why would I imply that doctors don’t care as much, or even if at all? It’s because of the word “rare.” What? Yes, hear me out… Now I know many of us who love the medical television shows believe there are doctors out there (like House) who deliberately seek out the rare illnesses. However, that is not the case in reality. I’ll take it back to the 1940s when Dr. Theodore Woodward originally said, “When you hear hoofbeats, think of horses, not zebras.” This is a phrase that, to my understanding, the majority of doctors in medical school are being taught. They are in the medical field with this mentality that not only should they “play it safe,” but the money is in the masses.

Because Ehlers-Danlos syndrome has been coined as rare, it is far more likely to be overlooked as opposed to being embraced as a potential diagnosis. Now, think of all the people you’ve met that consider themselves “double-jointed” or hypermobile – maybe you’ve seen these people doing weird party tricks with their body and they just brush it off as normal for some people. Think about the wide range of symptoms they may have but never considered linking these seemingly random symptoms. When you take the symptoms of Ehlers-Danlos apart, they seem benign or irrelevant. If you know what you’re looking for though, it could potentially save lives or, at the very least, increase quality of life.

I’m not saying everybody has Ehlers-Danlos syndrome, but we need to raise awareness to get an idea of just how rare it actually is. We cannot coin an illness as rare when there is little to no knowledge on it. So many people out there have hypermobility and if we could educate the masses, starting with the doctors, maybe then can we see the bigger picture and start getting sufficient treatment plans set in place as opposed to just throwing pills at the symptoms.

General doctors look at Ehlers-Danlos syndrome as a waste of time because they believe they may come across one or two cases in their lifetime of practice. It makes sense. Why would they go out of their way to learn about an illness when it’s not what the average person is likely to present symptoms of? It’s not practical, and I’m not mad. But in my small town I know of 10 people who have the illness, and I am not a popular person. I don’t go out seeking people similar to me. I just found them. They all had a legitimate diagnosis when I met them, and no one knew each other prior, meaning no one sought the diagnosis due to basic awareness. We all just knew there was something off about our bodies and we listened to what it was trying to tell us.

Other people may not know to do the same. Everybody comes from different situations and handles things differently. Some may grow up shoving their symptoms under the rug, or others may not realize that hypermobility is just a symptom of a whole illness, so they ignore it and end up paying for it for the rest of their lives. Without that basic knowledge and understanding, people might needlessly suffer. If you don’t know what to look for, you won’t know how to handle your own body.

Even with the knowledge and diagnosis, we still end up injuring ourselves and cause great trauma to our bodies simply from carrying out simple daily tasks. But without that knowledge, I personally don’t know where I’d be. People tend to expect a lot out of seemingly normal, able-bodied humans, be it helping a friend move, carrying in groceries, going to a theme park (which can actually cause paralysis for us) or even just goofing around. That which people don’t understand about invisible illness is intensified with Ehlers-Danlos syndrome, because it is an invisible illness that is invisible even in most of the medical field.

Which brings me to the last point I want to make:

So we’ve raised the awareness, now what? We educated everyone and that’s great – but what do we do with this information now?

Of course, aside from the obvious of wanting new treatment options and simply wanting doctors to not shy away from me because I have an illness that’s new to them, I want it so well known that we have schools screening for it. Again, I’ve had it brought up that this may not be practical, but if we focus only on hypermobility, then can we screen for it. The Beighton Scale is not rocket science. The Beighton Scale is a physical examination that literally anyone can perform on themselves to get an idea of whether they may be hypermobile or not. Using the Beighton Scale only, if we screened every school child when they hit mid-teenage years, 13 and up, for simple hypermobility, that means we could potentially cut down on school injuries by restricting physical stress in P.E. and send a notification to the student’s parents that their child displays signs of hypermobility and what that could potentially mean for their future well-being. In the notification, we could point them in the right direction of getting to the right doctors to evaluate the student’s  potential for an Ehlers-Danlos diagnosis.

This is just my attempt on raising awareness in my own way. I feel the need to speak on my experiences to truly connect with able-bodied people so that one day we can all sympathize with each other and our daily struggles. My Ehlers-Danlos people are real fighters. We are fighting daily to exist with an illness that hardly anyone even knows exists. We will always be the zebras.

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Thinkstock photo via TongRo Images Inc.