Knowledge is your friend and quite possibly your best friend in dealing with or advocating for someone with a rare disease. I hated high school science, it was so dry and boring and it didn't really convince me that it was somehow connected to my life. When we got to anatomy and physiology, even worse luck for me because I'd been scarred beyond therapy by Slim Goodbody during childhood. Maybe you were too? Maybe he's still scarring you since Slim's gotten all tech savvy and is everywhere these days...Pinterest...youtube...even facebook!
If you're the kind of person who believes that education ends with a high school or university diploma, you're probably not going to like what I'm going to say. But hey, after surviving high school and university I became a dedicated Life Learner so I get all giddy over the idea of learning something new. Hopefully, when you see how much it's going to help you, you will too.
Dealing with such a rare disease as Klippel-Trenaunay Syndrome, knowledge really is your best friend forever. You don't have to have MD after your name to understand how the body works, why certain lab tests are performed or to know that something's not quite right and it's time to call the doctor. Knowing the layout of the body and how it functions will also serve to take that "oh my gawwwwd" edge off of any scary-sounding proclamation your doctor may make and stop some of that knee-jerk denial or fear response when s/he mentions a particular surgery or procedure. Where knowledge will really shine as your BFF is when a doctor tries to blame something utterly impossible on KT. Oh, don't look at me with that shocked look. Doctors are human too, and especially with a rare condition they are often... shhhh, don't tell anyone I said this: clueless. But wait, if you are shocked then maybe it hasn't happened to you. Yet. And that's a Very Happy Thing. But yes, some doctors will say some crazy things. Sometimes to calm you down. Sometimes to get you out of the office. Sometimes because...you know I'm going to say it...they haven't a clue either and KT is just as convenient as anything else they can pull out of their hats. We've had it happen more than once, unfortunately, particularly with specialists who are usually so busy looking for something in their field they forget to widen their scope a little. Oh, and with doctors who are so used to treating common conditions that, because they've never seen anything like Klippel-Trenaunay, they don't believe that it or its accompanying baggage exist. We've had a doctor confuse a swollen lymph node with a lipoma...a nurse who'd never seen short-stretch bandages before tattle to a doctor that we'd been wrapping with ace bandages instead of wearing compression garments for his chronic venous insufficiency...I could go on but you get the idea.
It's really easy to learn the Body Basics. How? Your local library may have some good textbooks or books for Average Citizens on anatomy and physiology. And why not start right now? Here are a few links to make your brain all happy:
Innerbody ~ easy and fun, what more to say?
Get Body Smart ~ not quite as cool and lacking a bit but still a decent resource.
Cliff's Notes ~ who knew? I never used 'em when I was in school (because, well, I'm Asian and that was considered "slacking" in my family) but here Cliff and his notes are in all their glory on the web. Not as interactive nor visual as the other two sites but still some good information.
Wishing you luck on your journey...
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