Stuff That Works - Find what works from patients like you!
You know that feeling when you find someone who's experienced the same random lupus symptom you have? How about when you discover they've also tried the same treatments you've tried? And when they say they've found success doing X, Y, and Z, just like you?
Validating and encouraging, isn't it?
As lupus warriors, we love hearing what works and what doesn't from other patients. Given the variable nature of our disease, the symptoms, treatments, and triggers of lupus can be difficult to pin down. That's why we want to hear from people who've actually been there. It makes sense. It gives us hope. It just works.
That's why StuffThatWorks, a crowdsourced knowledge database for chronic conditions, is a resource from which any lupus patient can benefit.
Here's how it works: Through a first-time questionnaire, patients like you and me share our experience about treatments and other aspects of our disease activity. StuffThatWorks collects, analyzes, and organizes the data and shares it in easy to read, digestible formats like the infographics below. It doesn't take long for the database to start revealing treatment effectiveness, generated from people who know what works best - us!
Once you've completed the initial questionnaire, you'll have access to this centralized location of gathered data and experiences. From there, you can use it to discover what treatments are working, what side-effects are common, and whether changes in lifestyle, season, or diet might make a difference in disease activity.
By crowdsourcing, just like Wikipedia or Waze, useful information can be obtained from a huge group of an ever-evolving number of people. And with every additional input, the data just gets richer and more accurate. When it comes to proven treatments for my aching joints, skin rashes, and hair loss, I say the more specifics, the better!
The best part is that your contributions don't just stop with the initial questionnaire. There are ongoing opportunities to answer questions posed by other contributing members, so you are continually updating and enriching the database, as often as you like.
There's a ton of information on the StuffThatWorks’website, and here's a link to their FAQ page.
Click here to contribute to the Lupus Research Community:
https://www.stuffthatworks.health/lupus?token=5BoyGOUI
Check out the telling infographics below, generated from contributors (like me!) for the StuffThatWorks lupus community.
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