How do you as a patient raise awareness for your disease?

BorealisBorealis Member New Member

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.

Comments

  • JMJM Member New Member
    Since I was diagnosed I have been very open about it. I share it with my friends, share everywhere I go  store, the gym, today my sister and i shared at the bank, the manager and the banker told us that they knew somebody who had lupus. They will follow us on social media and hopefully they will join  our support group.
    I've also shared with people in Mexico and have given support to someone in Mexico.
  • BorealisBorealis Member New Member
    Wish more and more people would raise awareness any way they can. 
  • StephbuttaStephbutta Member New Member
    I have become very open about it. Every year I raise funds for BOTH walks this one and for the Lupus foundation of America. I advocate, share awareness posts every May. I blog about my lupus journey but I’d still like to do more. 
  • JK_Q_TJK_Q_T Member New Member
    Is awareness beneficial? Or this could lead to shame and heartbreak?
    I need to do lots of things but my body gave up. It isn't too much yet I haven't completed my tasks.
  • BorealisBorealis Member New Member
    To me, awareness is beneficial because it helps others understand our struggle.  Like how do you tell a friend that you must sleep an incredible amount of time and still wake up tired? I wouldn' do it if it' hard on you. So sorry about how badly you'e feeling. We can only do so much before our body says "stop! Not today, not now, not anymore!"
  • MarcoHaamansMarcoHaamans Member New Member

Sign In or Register to comment.