For old-timers like me who grew up in the Dark Ages before the internet, it’s still amazing to think that you can access what amounts to the contents of the world’s greatest library in a device you can fit in your hand. And it’s doubly amazing to see how quickly our daily lives have coalesced into orbit around the online world.
But that unprecedented access to information is a double-edged sword: While you can now access information about virtually anything from the comfort of your home (no more trudging to the library through the snow, uphill in both directions), there is absolutely zero guarantee that what you find will be good information.
As much as we’re loath to admit it, the default for learning about something new now seems to be “Google it.”
And while I suppose I can learn to live with Google as a verb, none of us should automatically accept the first handful of search engine results that pop up as gospel truth—especially when it comes to learning about rare diseases like Behçet’s disease.
So how do you sift through the information that’s out there (apart from visiting Patient Worthy, of course)? When I encounter a disease or medical term I’ve never heard of before, my first stop is generally the National Institutes of Health, or NIH.
The NIH is part of the Department of Health and Human Resources, and serves as the nation’s top medical research agency, funding clinical trials and research across the spectrum of health and wellness.
It also offers a wealth of health and disease information online, and Behçet’s disease is no different.
The NIH’s Behçet’s disease page is a great place to get a crash course in understanding:
- what the disease is
- how it works
- how it’s treated
Once you’ve soaked that information up, you can follow the links on the page to find clinical trials in Behçet’s disease (pro-tip: They’re recruiting for two trials right now!).
You can also read more in-depth journal articles (fair warning: Some may require a small fee to read the full article…and once you get to the full article, it may be painfully dense and tear-inducingly boring).
And if you’re hungry for more information, follow the bread crumbs to the bottom of the page for links to additional resources.
The NIH isn’t the sole place to learn everything you need to know about Behçet’s or any other disease—that type of learning is a lifelong process, and there are some lessons you simply can’t find online.
But if you want to cut through the outdated statistics, misleading headlines, and dire worst-case case scenarios, this is a great place to fill up on the information you need for the journey ahead.
Check out the NIH’s Behçet’s disease page for yourself. Have you found any other great Behçet’s resources? Share them in the comments below!
