Work­ing for change

WKND - - Health -

In 2011, the Voice of Lu­pus Foun­da­tion was formed. And I’ve never looked back. The mis­sion is to give this largely med­i­cally un­recog­nised dis­ease a voice world­wide through ag­gres­sive out­reach ef­forts, aware­ness cam­paigns, and social net­work­ing. We are try­ing to build sup­port for the needs of those af­fected by this de­bil­i­tat­ing dis­ease, and to el­e­vate lu­pus to a place of promi­nence on the global health care agenda — be­cause any­one can get lu­pus. It doesn’t re­spect gen­der or eth­nic­ity. But the symp­toms can be mis­di­ag­nosed for many years. De­lays in di­ag­no­sis and treat­ment can re­sult in per­ma­nent or­gan dam­age or loss of life. What we’re try­ing to do is change this through ed­u­ca­tion, ad­vo­cacy, aware­ness and ac­tion.

Do I re­gret hav­ing lu­pus? I wish I didn’t have it, but lu­pus has been more of a bless­ing than a curse to me. It’s through my char­ity that I have been able to make a dif­fer­ence in other peo­ple’s lives. I’ve learnt to man­age my ill­ness too. It’s been a strug­gle but I have over­come and only did so by the grace of God. Ed­u­ca­tion brings em­pow­er­ment. You must have knowl­edge of your dis­ease and be hon­est with your­self.

Lu­pus is not a death sen­tence and there is hope. Some­thing I al­ways say is: I may have lu­pus, but lu­pus will never have me. I do not be­lieve lu­pus should de­fine who you are. Ed­u­cate your­self and lis­ten to your doc­tors. Sure, I’m still in pain — but it’s be­come about find­ing pur­pose in that pain. And I would en­cour­age any­one else with lu­pus to be­come their own cham­pi­ons of hope too. Lu­pus sucks — but we’ve got to fight back.

( Visit www. thevoice­oflu­pus. com for more in­for­ma­tion or to get in touch.)

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