HAWMC Day 4: Self-advocacy 101 for Everyone!

Posted: April 5, 2013 in Autonomic Nervous System Dysfunction (Dysautonimia), Medical Conditions, Research, Technology
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photoOver the course of my careers, education and being a medical oddity, I learned that it is not only important to know where to look for information, but how to look for it as well. I am grateful that my education started long before the Internet was even a “thing,” which is another way of saying I learned how to research using those things called books, periodical indices and encyclopedias. I think that my experience with tangible materials has made the info mining process on the web so natural for me. It is often not so much the tool we use, but the search terms we choose that lead us to the information we desire.
The absolute fist place I start my search for information on any issue is Google Scholar. This is simply Google that focuses the search results in professional literature, journals, and texts. Once I locate a result that is on topic and that is accessible (sadly, some results can be subscription only), I go to the references for additional information. There you can find many more topically appropriate resources. Often, you can learn additional search terms that are either “terms of art” or the fancy, scientific ways of referring to what you are searching for. Then, you can use these terms to search Scholar again, or go onto other sources of information. (Example: “dysautonomia” is not a term frequently used in US literature. The terms “autonomic nervous system dysfunction” or “autonomic disorder” will return more professional results in most searches.)
Additional sources that are excellent for gathering general info and details on diagnostics are the
Mayo Clinic and Medscape. I highly recommend registering for Medscape’s educational updates in your area of interest (such as Neurology and Cardiology, if you want to stay updated on autonomic system stuff.) There is a great educational update service on the Mayo site as well, called “Hot Topics.” You will have to register as a “medical professional” for both, but I’m sure you can figure that out…
There are many sites I have found helpful for each of my “medical challenges.” It would be far too overwhelming to list all of them here. I located all of my most helpful sites through the three sites I listed above. I have found excellent treating physicians and surgeons via these sources simply by noting the research principals for the articles that were specifically “on point.” If possible, you most definitely want to have a treating physician in ANY field to be involved in research at some point in their careers.
These guidelines can be applied to any medical issue. I hope that you find this info helpful to jump- starting the creation of your own personal list of resources.


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