How do you as a patient raise awareness for your disease?
Ever since I was diagnosed in 2016, I have been a constant advocate for Lupus anyway I can. I don't have many resources, but I have joined communities of lupus where the patients are all over the world, but mainly in Spanish-Speaking countries in which they don't get too much information from caregivers and sometimes there is a lot of confusion. So I translate articles from these types of organizations we have (such as Lupus Foundation of America) and I publish them to those Facebook pages (giving the credit to the corresponding organization, of course!). I also publish my own comments such as raising awareness for days like today (World Lupus Awareness Day) and answering any questions they may have. Even patients sometimes don't know about certain lupus topics, symptoms, etc perhaps because they haven't had to experience them and because each and every lupus patient is so different from another! I also participate in lupus studies to advance the research in hope of finding a cure. These patients in many parts of the world, don't even get a chance to participate in studies and perhaps that's why one of the most affected communities isn't being included in studies to create new medications.
So, I wonder how others like me share and help in their lupus communities.