Very Aware of EDS for Our Awareness Month

Hi guys! This week there won’t be much new stuff on the blog. My family got rear-ended by a distracted driver, and although luckily all our injuries are minor, mom and I took the brunt of the pain from the crash. We spent last night at the ER after I took an ambulance ride to the local trauma hospital- seriously, we were there maybe six or seven hours. Then today mom wound up at the ER for her own injuries. We’re all gonna be okay, but since it’s Ehlers Danlos Awareness Month, I thought I would talk about a few Ehlers Danlos things that are important when you’re in a trauma situation!

Image With Ehlers Danlos, our faulty connective tissue can mean any trauma- even the kind normal people would be able to walk away from unscathed- can quickly become major. Hypermobility in the neck means that whiplash will be worse, and although neck trauma is always considered an emergency, neck trauma with EDS is an emergency that will have four or five ER doctors looking at your before you’ve even made it to a room, especially if you’re at a teaching hospital that specializes in trauma. However, if you’re lucky enough to get an ER doc who actually knows about Ehlers Danlos, like I was, it’s going to be the best ER trip of your life. (Well, as far as ER trips can go.)

Since you have a connective tissue disorder, you’re going to have a lot more tests done than a normal person. There were other trauma patients at the hospital, and they all got out sooner than I did. An MRI, three CT scans, X-Rays, and more people poking me and asking questions than I can remember, and it still took six hours before they would even un-immobilize me. 

However, everyone wanted to make me comfortable, which was an experience I have never had at an ER before. The doctor wrote up zofran and dilaudid before even looking at me, and once I had a burst vein from trauma complications and a faulty IV (hint: if you think your shoulder is dislocating, tell a doctor before they try to use the vein in that arm. It will end in nothing but tragedy), he had me up in warm compresses and IV medication in the other arm before I even knew what was going on. 

Everything turned out to be minor- I’ll recover from the head and neck trauma, I need to keep an eye on my rib and liver area, and the huge swollen arm on my left side should return to normal once my body slowly works the stuff out of my system.

The worst part is, if you have EDS, your worries don’t end once you walk out of the ER. You’re given a list of signs and symptoms that should immediately send you back to the ER, a list to call your doctor about, a stern warning to follow up with your doctor no matter what, and you’re rolled out with an Aspen Vista cervical collar still on. Compared to my ER visits before I knew I had a connective tissue disorder, the amount of follow up necessary is incredible! It’s enough to make me more than a little paranoid.

And with that, is my ribcage looking a little swollen dangerously near my liver, anyone? Haha- just kidding. Probably.


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