Most don't know that a Zebra is the nickname for a person who is a medical mystery. In medical school, or nurse practitioner school as my case is, you learn a saying. I remember reading it in one of my books during my very first term of grad school. It goes something like this:
If you hear hoof beats think horses, not zebras.
What they mean is, when a patient comes in with a complaint, look for the easiest and most obvious reason. Don't get excited and waste time and resources looking for rare diseases. Those of us with Ehlers-Danlos use the zebra as our sign. Its on our awareness ribbons, we tend to collect zebra patterns. We have a rare disease. If a physician isn't looking close enough, they will see pieces. A fluctuating or high heart rate. Chronic pain. Arthritis. Hypermobility. Gastric issues. So they will diagnose easy things such as tachycardia, fibromyalgia, arthritis, irritable bowel syndrome. But if you pull the whole puzzle together, you'd find a rare disease, a zebra. Sometimes the symptoms are not just small issues. Sometimes they are puzzle pieces.
Where do Pandas come into this? Well, a handful of us EDS zebras have been found to have odd symptoms that couldn't be explained by EDS. One of our genius doctors started looking deeper and made a discovery. Pandas! Really, its an acronym for pediatric autoimmune neurophysciatric disorder associated with strep. Its an autoimmune disease that, until lately, was diagnosed in pediatric patients. Turns out, though, that there are some of us out there that have it as adults, have probably had it for years and years, untreated. It presents as anxiety, depression, OCD, mood swings, tics, tourettes, tremors, seizures, and a lot more things that I can't think of. It looks like a psych issue. But, if you look at our blood, you'll find that we have a problem. When we are exposed to certain disease, and its different triggers for many of us (strep, lyme, coxsackie, mono, pneumonia, etc), our body creates antibodies. In a normal person, an antibody is the way the body remembers and recognizes that disease on repeat exposure and can make what it needs to attack and kill it. In a person with Pandas, we make the antibodies long after the disease is gone. Those antibodies become confused and see the brain as the bad bacteria or virus. So, it sends armies of antibodies that somehow cross the blood/brain barrier and attacks our brains. They are literally trying to kill it like a disease. This triggers the odd behaviors. I mean, wouldn't you act odd if you had an army of antibodies climbing over and attacking your precious brain cells? Treatment varies, depending on the trigger and how long you've had the disorder, among other things.
I have both Ehlers-Danlos and Pandas. Not only is everything made of connective tissue inside me trying to fall apart, but my brain is being attacked! So, there you have it, zebras and pandas.
Oh....don't forget to share my page. And mention to your friends that there is a link to our fundraiser at the top of the page. Zebras and Pandas can be quite expensive!!
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