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Why Being a Medical Rarity Makes Me #ZebraStrong

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For those who know what Ehlers-Danlos syndrome (EDS) is, it’s become synonymous with the zebra. The zebra is our mascot. We wear zebra stripes and we tend to decorate our neck braces, walkers, or wheelchairs with them. What is with this seemingly random obsession, you ask? Well, we ourselves are medical zebras. It is a way we can identify ourselves without saying “I have EDS.”

Now, what the flying ferret is a medical zebra? Well, simply put, it is a name we’ve come up with for people whose diseases aren’t well-known, or rare.

Where does it come from? Well, for years medical professionals have been taught to rule out the most common causes of ailments first before moving on to more rare conditions. The reason for this is some standard symptoms of a common, treatable condition might also match up with those of a rarer, more severe or even incurable condition.

I think the standard person knows this all too well — just look up the symptoms of your common cold online with the help of Google and suddenly you’re “dying” from a dreadful and rare condition. More often than not, this quick keyboard diagnosis might not be 100 percent accurate. Diagnostics can be a difficult thing because there is a huge overlapping of symptoms from condition to condition.

In order to avoid leaping to extremes or jumping to conclusions while they navigate through these symptoms, doctors have been taught to go with the statistical norms. When working with a patient, they must first cross off all of the more common causes before making their way to the enigma that tends to be rare disease.

They use a metaphor to guide them: “When you hear hoofbeats, it’s most likely a horse and not a zebra.”

The problem with this approach is even though it helps the majority of patients, those with rare or under diagnosed conditions tend to fall
through the cracks. And those with Ehlers-Danlos syndrome definitely have. There are several types of EDS, some of which are extremely rare and just as dangerous, for example vascular-type, but the hypermobile-type is actually thought to be fairly common, just extremely underdiagnosed.

People with EDS usually search for their diagnosis for years and years. It took me nine years, and I’ve met people who had to wait more than thirty to finally figure out the name of the condition that completely changed their lives.

A zebra is so much different from a horse, so by the time people with EDS start to take off all of the horse masks that were added by (hopefully) well-intentioned doctors, we end up proud of our stripes. We finally know what we are. We finally have a name. We finally have a support group. We finally have our validation.

And it took way too long.

One of the biggest reasons for that? Lack of awareness. Many doctors do not even know what Ehlers-Danlos syndrome is. They have to ask us how to spell it and do a quick online search before they can even continue with their examination. My guess is the doctors who have to do this can’t help us much more than we ourselves can. Even the EDS experts are still pretty
baffled on how best to help us because it is a multi-system disorder and there is much research that needs to be done.

That’s another part of why people with EDS identify as medical zebras. We’re more than just black and white. Our collagen, the protein that acts as a major building block in our bodies, is affected, so our entire bodies have issues. Our symptoms and our disorder are so multi-faceted, it’s hard to find a box to place us in. We are all so different from one another, it is hard to figure out the best way to treat our symptoms.

We fall through the cracks of misdiagnosis or remain undiagnosed, with doctors saying, “Huh that’s weird but I have no clue what that is.” Or the way too standard, “We can’t find anything definitive that explains these symptoms, so this must be psychogenic or psychosomatic.”

Of course, constantly being told our illness is in our heads for years and years, while it’s actually in our bodies may lead to some mental health problems. We also pretty much never know when one of our joints will dislocate or when a particularly bad episode of dysautonomia, periodic paralysis or something else may hit, which could also lead us to develop anxiety.

What’s the biggest problem of being an under diagnosed zebra?

Because we wait for years and years to receive a diagnosis, our symptoms and condition progresses at a speed and in a manner that is actually avoidable with the proper intervention and care.

This is a degenerative, progressive, genetic disorder with no known cure, but that doesn’t mean we can’t slow down its progression. If we can set people up with the proper medications, with the best physiotherapy plan and get them the assistive devices that they need, we can keep them much healthier for far longer. We can prevent much of the muscle, joint, and even skeletal damage that is being caused. There are medical zebras with EDS in wheelchairs who probably wouldn’t have needed them if they got a diagnosis a decade earlier than they did.

So this is why we are #ZebraStrong.

We are #ZebraStrong because we are figuring out how to survive in bodies that struggle really hard just sitting – our muscles are constantly in overdrive trying to keep our bones in place.

We are #ZebraStrong because we make it through every day with lots of pain and little relief from pain medications.

We are #ZebraStrong because we’ve learned to navigate an extremely difficult healthcare system that isn’t exactly geared towards people like us.

We are #ZebraStrong because we’ve learned there’s strength in numbers and we can help other people like us live better, healthier lives.

Help us to be ZebraStronger! Talk to your doctor and ask if they’re aware of EDS. Send them to this website so they can start to get the information they need to help and diagnose people sooner. Look up what EDS is yourself. Talk to people you know who might be showing symptoms, and ask them if they’ve heard of it.

A group of zebras is called a dazzle, so please help us and other medical zebras. Let’s dazzle together!

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