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Queens Chronicle

LUPUS AWARENESS • 2019 Striking back at lupus at Jamaica gathering

Chronicle, businesses team up with patient advocates to raise awareness

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Posted: Wednesday, November 27, 2019 10:30 am

Lupus isn’t the best-known chronic disease. But Jules Grant, 53, lives with it.

“I’ve been living with lupus since I was 12,” said Grant. “In the beginning my elbows used to lock and I was a tomboy, so doctors initially thought it was a sports injury.”

Growing up, Grant, the founder of Lupus Connection, was an athlete and loved horseback riding, swimming, basketball, softball and volleyball. Today she is the office manager at the JFK Redevelopment Community Information Center.

Raymour & Flanigan and the Queens Chronicle hosted Lupus Connection, a nonprofit that works to bring awareness about the autoimmune disease, at the furniture store in Jamaica last Wednesday to raise awareness of the disease and where patients can turn for support. Aside from host Raymour & Flanigan, Helium Image of Jamaica provided balloons and decorations and the Bayside Kiwanis Club made a donation.

“Fortunately, I had a very good pediatrician who had just [gone] to a symposium for black women’s health and [they] tested me for lupus with the anti-dsDNA test,” said Grant. “I was just a child, so my parents were more worried about the diagnosis than me. I was like, just give me more Alka-Seltzer, because that’s what they were giving me before to make the pain go away.”

The anti-double stranded DNA test checks for a specific antibody that determines whether or not an individual has lupus, according to the Johns Hopkins Lupus Center.

“The diagnosis didn’t really bother me until I had to start going to different doctors,” said Grant. “I had to go to my pediatrician, a hematologist and a rheumatologist.”

As a teenager the only medication that helped Grant with her condition was steroids.

“To be a young girl on steroids was not good, because you would blow up and look like a cow,” she said. “It was rough, the weight fluctuation was rough.”

It was in adulthood that Grant came to terms with the disease.

“I have systematic and discoid lupus, a double whammy,” said Grant. “I have faith in God, so I never worried about it killing me. I lived a very full life. I had my kid, I drank and I partied. I did what my parents did and when I wasn’t feeling good I slept.”

Systemic lupus erythematosus affects different parts of the body and discoid lupus erythematosus affects the skin, scalp and face, leaving a scarred appearance like a wolf’s bite, according to the Lupus Foundation of New England.

Bernadette Pierre, a Queens Village resident, was the former head of Research & Library Sciences at the Rockefeller Foundation, but gave up her corporate career nearly two decades ago when her then-4-year-old daughter started showing signs of lupus.

“It was strange,” said Pierre. “We noticed she had a butterfly-like rash, but we couldn’t understand it because it wasn’t something that showed up in our family history. A pediatric dermatologist told us that it was lupus prior to all the blood work.”

Pierre was shocked by the diagnosis, but the doctor was certain about the scars on her daughter’s face and referred the mom to an endocrinologist and rheumatologist.

“All year long there is a problem with lupus,” Pierre said about her now 23-year-old daughter. “In the hot weather she is allergic to even lights in the house, much less sunlight. So in the summer she has to have sunblock, hats and long sleeves, which is odd for a kid. Then during the winter her feet, arms and fingers — all the joints hurt. Then her fingers also break out.”

At school Pierre’s daughter was bullied about her skin and teachers would put her in special education classes because she struggled to write as fast as other students and at times had cognitive fog, which made it hard to focus.

Despite having to cover up much of the time, Pierre’s daughter has found comfort in cosplaying, where she gets to dress up during Comic Con events with her father.

Pierre would sit on her daughter’s school board to bring awareness about the disease, hired tutors to help her child and gave her positive reinforcement to help her persevere against the bullying.

“She just graduated college in May and works as a software developer,” said Pierre. “My daughter was the captain of an all girl’s robotics team in high school. We knew once she set her mind to something that she had what it takes to complete her degree.”

Sanjay Gupta is a recruiter and educator for Be The Match, a bone marrow registry. Bone marrow transplants can help some patients.

“We all have a DNA duplicate out there,” said Gupta. “In order to get to that person we have to get to that person and go through their beliefs.”

There are 18,000 patients of different backgrounds across the U.S. in need of a bone marrow transplant for diseases like lupus, according to Gupta. But the odds can be daunting.

“If you are Hispanic you have less than a 10 percent chance of finding a match,” he said. “If you are Asian like me you have less than an 8 percent chance. If you are African American it is less than a 7 percent chance and if you are mixed race or Pacific Islander you have 3 percent or less to find a match.”

Gupta hopes that more people will sign up to provide the life-saving donation that can help those with blood cancers and auto-immune diseases find a new lease in life. It just requires more individuals of different backgrounds to join the registry.

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