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Survivors Advocate For Lupus Awareness

By JEFFARAH GIBSON

Tribune Features Writer

jgibson@tribunemedia.net

LUPUS survivors continue their efforts to heighten awareness locally about the disease. The “Lupus ME? Foundation” in the Bahamas, along with students and faculty of Palmdale Primary joined the global community last Friday to celebrate World Lupus Day.

The students and teachers wore purple in recognition of World Lupus Day. The event was organised by the foundation as part of its effort to fight against the disease and educate Bahamians on early intervention.

Lupus is a disease where the body’s immune system mistakenly attacks healthy tissues and organs. As a result, various systems of the body such as joints, the brain, skin, heart and lungs are affected and unable to properly carry out their functions.

The Lupus ME? Foundation is was founded in 2012 by Bahamian survivor Deirdre Bain. She was inspired to start the foundation after being diagnosed with Cutaneous Lupus Erythematosus, a form of the disease that causes lesions on the skin.

Although several of Deidre’s relatives had lupus she did not think that she would also be diagnosed with the disease.

“I never once thought I would have lupus. My sister has it and I had another relative who passed away from the disease. Before I was diagnosed, I noticed that I was having rashes on my skin. So I tried to make some minor changes, like changing the detergent I washed my clothing with because I thought the rashes were occurring because of that. But even after doing that I noticed the rashes were still there,” Mrs Bain told Tribune Health.

It was not until Mrs Bain noticed unusual swelling in her face that she quickly sought medical attention. After being examined by the doctor, she was referred to a lab to be tested.

“It was a shock to me when I initially found out that I had lupus. I know there are people in my family who have the disease but I never thought I would have it. It was also at the point when I realised that the disease was hereditary.

“I remember the pain my sister went through when she had it growing up and how it affected her. I never wanted to go through what she went through, because she had such a bad experience. But I do not experience the same amount of pain she did,” Mrs Bain said.

Mrs Bain said finding out as much information as she could about lupus is what helped her survive. She encourages those who have also been diagnosed with the disease to find out as much as they can.

“Lupus is manageable, but you have to make some lifestyle adjustments. I had to change the way I ate and lived. It is important to do these things if you want to have a quality of life,” she said.

The Lupus ME? Foundation is a non- profit organisation that seeks to promote awareness of lupus in the Bahamas.

“We aim to partner with others in providing information about the causes, effects and treatment of lupus. In addition we also seek to provide assistance where necessary to persons diagnosed with lupus.

Our call to action motto is “Walk A Loop” which encourages lupus survivors and supporters to take a short loop walk subject to physical limitations,” she said.

Events for the remainder of the month include school outreach, Walk-A-Loop, and t-shirt day.

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