Orphan Zebra

In the United States, the only place you’ll see a live zebra is in a zoo. I’m sure there are exceptions, but we don’t have roaming herds of zebras in the streets. Which means you have to go out of your daily routine to see one. Which, by definition, makes seeing one an unusual occurence.

In the medical field, physicians are taught that when they hear hoofbeats, think horses not zebras. Meaning that most illnesses are common enough that physicians see them all the time, like horses in the United States. Every once in a while, a person shows up with something that isn’t a horse. These diseases are referred to as “zebras” because while uncommon, they have been identified. Zebra illnesses are absolutely no fun. Most don’t have enough research dollars attached to them to make studies viable. So, people with zebras tend to stumble along, treating symptoms as they appear and hoping for the best.

Then there are people like me. I’m coining the term “orphan zebra” here. Not only are some of my illnesses zebras, they are so rare that there are fewer that 300 confirmed cases worldwide. We’re orphans in the medical field because doctors only read about these illnesses. Our illnesses are often mistaken for horses because the doctor has never even read about the illness. And as far as treatment goes, unless some fabulously rich individual happens to take pity on us, we muddle through because no one wants to research something that isn’t funded.

I think the worst part about being an orphan zebra is that no one believes these illnesses exist. There is very little research and you have to dig through many medical journals to find it. Doctors are uncomfortable with the findings because they’re not “normal” and thus out of anyone’s area of expertise. You can treat the symptoms, but there is no guarantee the standard treatment will work, because the treatments were developed with horses in mind.

The second worst thing for me is knowing exactly what is wrong and not being able to do anything about it. I have the diagnosis. Now what? Well, nothing. I can’t travel to an exotic location where the one person who is researching these illnesses lives. There are no clinical trials. It’s all hit or miss, mostly miss unfortunately.

The third thing that bothers me is that people with similar symptoms suddenly believe they have the orphan zebra. I’m not naming things in this post because I’m tired of others assuming they have these orphan zebra illnesses. This is a personal pet peeve. In some social media groups that focus on chronic illnesses, it’s called “the dyingist game” and people post to one-up each other on who is the sickest. This kind of behavior detracts from the seriousness of the illness.

I will give one example. Our local news outlets have spread the word that this year’s flu is deadly. In my home state, 23 people have died from it while over 25,000 cases have been reported. I was in a local emergency room last Tuesday. There were people there who had been waiting over 4 hours to be seen. Many were school aged children who were running laps around the waiting area. As I watched them be called back and sent out 15 minutes later, bottle of acetaminophen in hand, I wondered why they didn’t just stay home and let the bug run it’s course. Then I realized the media had turned a horse, the flu, into a zebra.

In the meantime, my zebras were running rampant in my body to the point where I was about to pass out. After 2 hours, I was placed into an ER room. I swear those zebras trampled my innards, worked up a sweat that translated into a fever for me and burned up all my glucose causing a diabetic emergency. A bottle of pain reliever was not going to fix this.

My piece of wisdom for today…don’t go looking for zebras. As the United States moves towards universal healthcare, accept that you may contract some horses and take responsibility for recognizing that and caring for yourself. Going to the hospital is not “cool.” Resources are going to get scarcer and you’ll be more comfortable at home anyway. Should a zebra come knocking, make sure you do seek appropriate care and learn all you can about how to care for your zebra. And should your genetic fate include an orphan zebra, well, learn as much as you can and keep an open mind.

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