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Educating Doctors


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I don't know about where all of you life, but very few doctors here are familiar with dysautonomia. I find myself having to explain and educate doctors on what it is and how it affects my toddler nearly every time we add in a new specialist. Have any of you made a brochure or something like that? Do you have to educate your medical professionals?

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Oh, wow! A brochure! I'm going to print one out to each doctor that my girls see. Would save me some time, that's for sure.


Get used to the fact that you have to be the doctor. I've been to one doctor appointment in 18-1/2 years that I did not have to be the doctor. It comes with having a chronic illness that is yet to be in the forefront of a doctor's interests. My girls are 19 and 17 now. We are just now starting to see a couple of doctors that are educating themselves about Dysautonomia, or as their neurologist puts it 'autonomic instability'. He said he likes that term better. It explains it better to him. We live in the San Francisco Bay Area, where good doctors are thought to be everywhere. And, for the most part, they are. I read about a lot of people having to fly out of state to get to doctors that we can see locally. I feel blessed to be among those that don't have to travel, as my girls are having a very hard time right now. Travel would not be possible. I know what you are feeling, I've been there, done that. Hang in there, your child needs you! :)

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