Bed-Stuy advocate, lawmaker hope proposed legislation will help those diagnosed with lupus

Lupus is a chronic autoimmune disease that affects many different parts of the body.

News 12 Staff

May 30, 2022, 2:06 AM

Updated 749 days ago

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A Bed-Sty advocate and a lawmaker hope proposed legislation will provide more resources and support for those diagnosed with lupus.
Lupus is a chronic autoimmune disease that affects many different parts of the body.
According to the Center for Disease Control and Prevention, Black and Latino women are two to three times more likely than white women to develop the disease.
"I had three strokes, I had open heart surgery. I had pneumonia several times, so there were so many different things leading up to me being who I am now and how I stand," Camille Fanfair says. She's a lupus advocate who is still standing and still fighting after her diagnosis of the disease.
"I got diagnosed 17 years ago. I was going through a series of my skin was swelling, feeling fatigued. I went back and forth to the doctor who just didn't know what was going on, and then from my skin constantly swelling, I went to an allergist," Fanfair explains.
But after a series of tests and guidance from a doctor, Fanfair received answers.
"I was actually diagnosed, so it was like four years before I got diagnosed," Fanfair says.
The long time Bed-Stuy residents' lupus has been manageable with limited flare ups. She's the CEO of Essence of Ase, a brand of therapeutic candles and personal upliftment products that she says have prevented flare ups.
"You can do meditation. I'm a reki specialist. I live in meditation. I use different healing modalities, whether it's crystals or different things and it helps me with my lupus," Fanfair says.
Sen. Kevin Parker, who's been present for Fanffair's journey, hopes to help people who struggle with lupus. He's lending support to autoimmune and blood disorder research at the SUNY Downstate Medical Center.
"The people who are getting lupus are primarily women of color. And when you're talking about African American women, Latino women, the larger number and the largest concentration is right here in central Brooklyn, downstate that sits in the center of the county," Parker says.
Lupus can show various symptoms from fatigue, muscle and joint pain to skin rashes, which can leave many in question.
Parker hopes proposed legislation will pass in Albany to help people right here at home.
"We believe doing this research will really bring light and education to people generally in our community. But look at also how underserved that community is. We need to narrow in on why that is the case and give more time, attention and research to this chronic problem," Parker says.


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