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Ehlers-Danlos Syndrome - Why the Zebra?



‘Why the zebra’ is something that's talked about a lot in the closed-in online circles of people with Ehlers-Danlos Syndrome. When we are diagnosed or start to suspect the syndrome, the natural course of action for us is to start research. We don’t have the experience that people with common illnesses often have of attending a doctor’s office, being spoken to at length about our black-and-white diagnosis, and given endless leaflets of information on the subject. No, we often fight for our diagnosis though learning all of this ourselves first.


In my case, EDS was suggested to me by a Cardiologist, and I was told to go away and research it to see if it felt to me like it was a diagnosis that fit my experience. Of course, I would then need to go and see the right kind of doctor for an official diagnosis if my research proved fruitful. Seems like quite a lot of pressure to put on an early 20-something, doesn't it? But actually, I was one of the luckier ones.



Somewhere along this diagnosis timeline, with all the research we have to do, an EDS patient is going to read about "the zebra”. So naturally, by the time they have joined the online Facebook support groups and are talking to other Zebras, we all know who we are. We are the Dazzle. Which by the way, is the word used to describe a group of Zebras. EDS patients in these support groups will often start their posts “Hi Dazzle!”. It’s an identifying label for us that we have chosen, and makes us feel different and visible, in a good way.


But sometimes, I forget that people outside this circle don’t know why we wear the black and white stripes. Why we get excited when we see a picture of a zebra. So let me explain.



The origin of the word “zebra” being used in medicine actually goes all the way back to 1940’s America, when a professor called Theodore Woodward started using the phrase “when you hear hoof beats, think horses, not zebras”. He was referring to the fact that horses are the more common cause of a hoof beat noise. He was trying to explain that doctors diagnosing a patient should first think of the most common cause of a symptom, before they think of the rare one.


This in itself is not a bad thing. It’s true that if someone is being woken up by headaches every morning, they should get a brain scan to make sure they don’t have a brain tumor, or increased pressure. You don’t want your doctor to simply skim over that because you are hyper-mobile and assume it’s because your c-spine is unstable. In my case, it’s probably my c-spine. But I did get the MRI first.


The problem arises when doctors start to get so stuck in their ways, and embody this mantra about “horses, not zebras” so well that they never consider the zebra, even when all the tests for “horses” come back negative.



Let me give you an example.


I was in the emergency room once. It was not long after the heart surgery I've written about, so I was somewhat on the lookout for new cardiac symptoms. Having said that, as a person who had lived with POTS and arrhythmia for quite possibly a large part of my life, I was rather used to my heart beating 'a bit off'. I'm not overly sensitive or jumpy.


Tonight, however, I had been awake for hours past when I would usually go to bed because my heart was skipping around in my chest like a floppy pancake. I have a Pulse-oximeter – something that keeps track of you heart rate – at home and it’s usually very accurate. Tonight, however, it couldn’t figure out what my heart rate even was. When I tried to count manually – neither could I! my heart was beating randomly, all over the place. So, to the emergency room we went. The nurses were appropriately alarmed by what I showed them with my pulse rate when I walked in. Their machines could not find a steady rhythm either. I was on a monitor within 10 minutes.


The Dr’s reaction was a different story.



When he saw that my blood pressure was stable, and the skipped beats on the monitor were ‘benign’ as in - I wasn’t about to have a heart attack and die on him, he walked away after taking routine blood and didn’t return for 3 hours. During this time, the monitor stopped working. Nobody came to fix it. Eventually, I did it myself. I was familiar with hospital equipment by then. Nobody noticed that either.


The doctor waltzed back in saying that my potassium was low and to drink this disgusting purple stuff, but that he didn’t know why my heart was skipping. He blithely told me it was nothing to worry about and he was surprised I could even feel it. I wanted to tell him to try a body swap for a few minutes. I could SEE my chest moving in a not-normal way, like I’d just run a marathon. I started to say as he was wrapping up his little lecture that people with POTS are quite sensitive to low potassium, and I have a persistent history of my potassium being low. Could this be why my heart was skipping beats? “I doubt it” he said, not looking at me, as he pushed his way through the curtain to his "more urgent patients".


Strangely enough, I did feel rather a lot better after that mega dose of potassium. I contacted my POTS-savvy cardiologist the next day. Within 24 hours, she had me on a daily prescription-only potassium supplement and the skipping beats stopped within a few days. I remain on that supplement a year later.



This is a perfect example of a doctor refusing to see the ‘zebra’ in the room. And I didn’t even have an official EDS diagnosis at this point. It’s true, the level of potassium deficiency he saw on that piece of paper would not cause an otherwise healthy person to have crazy skipping heart beats like I was having. But my autonomic (automatic) nervous system is not otherwise healthy. My body doesn’t function like everyone else’s. And he did have enough information on that night to be able to see that. He just didn’t look hard enough. Didn’t consult the right person. Didn’t consider the zebra.


And this happens – all the time. Most Zebras develop a hatred of emergency rooms and any unfamiliar doctor within the first year of their diagnosis. Because so often they just do not have the time, experience and often the willingness to look at us and really see us. It results in sub-standard care and has, on too many desperately sad occasions, resulted in death.


So – we wear the Zebra like a badge of honor. We explain it, hopefully in briefer terms that what I have just done, every chance we get. We make that Zebra as visible as possible to remind everyone that Zebras may be rare, but they still exist. They are all different, no two Zebras have the same stripes. You may not be able to pick one out of the crowd. But we’re here. And wearing those stripes makes us a little bit easier to see.



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