Today is a beautiful, gorgeous day! Today, new medical research articles are being published about Ehlers-Danlos Syndrome! The classifications and requirements have been updated for the first time since 1997! After 20 years, we finally have some new information! Twenty years, people! I'm over the moon. I can't wait to skim the medical articles when they become available to the public later today. A "layman's" version will be published in a few weeks for easier access for everyone.
Do you realize? Do you understand? This means there is updated information that doctors can read to understand how to treat us. This means those of us who have gone misdiagnosed and shoved to the side can be like, "OH LOOK! MEDICAL RESEARCH THAT YOU CAN READ THAT PROVES I HAVE AN ACTUAL PROBLEM IT IS RIGHT HERE LOOK AT IT!" It took me 25 years to be diagnosed properly, and with these new classifications, my type of EDS diagnosis might get altered slightly in order for me to get more specialized treatments.
The original classifications of "1,2,3" etc. have been replaced by acronyms and easily-understood diagnostic criteria. My "EDS Type 3 Hypermobility" would now just be called hEDS. How great is that? The others acronyms I've seen so far are cEDS (Classical) and vEDS (Vascular). Later today, the articles about the three main types (hEDS, cEDS, and vEDS) will come available to the public along with articles about the lesser-known types. I can't speak about those because I actually don't know what they are. I'm excited to find out and see if I fit those instead of hEDS. But if I stay with a hEDS diagnosis, I'm okay with that. But I digress. The point is, PUBLISHED NEW RESEARCH FOR THE FIRST TIME IN 20 YEARS!
There is even research on pregnancies and EDS. I know I've been very quiet about this kind of thing, but I absolutely cannot get pregnant currently. Is it possible for me to get pregnant? Yes. Is it horribly dangerous for me and my unborn child? Yes. Would we both die or be horribly destroyed for life if I didn't have an abortion? With the research from 1997, yes. What is this new research? I don't know, but I'm interested to read it! What a beautiful day it would be if the horror stories of women who have EDS dying in childbirth, losing their babies, and being wrecked and their baby being horribly hurt would disappear from the internet or be a rare case instead of the norm!
A week from tomorrow, I go to my doctor to talk about getting a wheelchair. If there are treatments that can reverse the damage my joints have endured or treatments that can slow that nastiness down, sign me up. Seriously.
The symbol for EDS is a Zebra. Zebra stripes on everything. Why? Because there is a famous quote by Dr. Theodore Woodward. Addressing medical students in the 1940s, he said, "When you hear hoofbeats, think of horses, not zebras." So many of us have been treated as confusing "horses" by doctors who get frustrated with us and shove us to the side and dismiss us when we explain that we're different from other "horses." When we finally realize we've been zebras all along, the relief at having a name for ourselves is incredible. Even more rare is finding a doctor who knows what to do with our zebra-ness. The more light this disgusting, debilitating, awful illness gets, the more research will go into it and the more treatments will be discovered and the more people will be positively affected and maybe someday those of us who are "Zebra Strong" will not be seen as burdens to doctors, but as human beings who have a terrible but treatable ailment.
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