Working for change

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.)