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A slew of events is planned this summer throughout Volusia County to raise awareness about sickle cell disease, a group of inherited red blood cell disorders that can lead to debilitating and even life-threatening conditions. 

Sickle cell disease affects an estimated 100,000 people in the United States, the majority of whom are Black. An additional 2 million people are estimated to carry at least one of the genetic traits. 

The traits are inherited, which is one of the reasons education is so important, said Keiana Griffin, CEO of the Daytona Beach-based Levi Long Sickle Cell Association. The charity organization is named for Griffin’s step-uncle, and its mission is to educate and advocate for those who may carry the sickle cell trait.

“It’s so important to not spread this inherited disease, because that’s the only way you can get it,” Griffin said. “Trait plus trait equals disease.”

Misunderstanding and poor treatment are some of the largest obstacles to overcome, according to Griffin.

“If you have family and friends that have sickle cell, please feel free to share information with the doctors, call the hospitals, make sure that they’re treating your loved ones kindly, because they’re mistreated, not only in Florida,” Griffin said. “Everywhere in the whole world, they’re mistreated from this disease.”

To Griffin, the reason why they are mistreated is clear.

“It is known falsely and mythically as a Black person’s disease,” Griffin said. “That’s why people are mistreated — because it started out as an African American disease.”

DeLand

Butterfly Release in the Spring Hill Garden: 5-6 p.m. Thursday, June 3, at the Spring Hill Community Garden, 501 S. Delaware Ave., DeLand

Rocking the Red event: 10-11 a.m. Wednesday, June 23, at DeLand City Hall, 120 S. Florida Ave.

 

Information will also be available at: 

Juneteenth: Saturday, June 19, at Earl Brown Park, 750 S. Alabama Ave., DeLand

Mayor’s Backpack Giveaway and Health Fair: Saturday, Aug. 7, at Earl Brown Park 750, S. Alabama Ave., DeLand

Also, a sickle cell awareness mural will be unveiled in mid-September at a location TBD. 

Daytona Beach (all events at Derbyshire Place, 962 Derbyshire Road)

Butterfly Release: 1-1:30 p.m. Saturday, June 5 

 
Information will also be available at: 

Juneteenth: Saturday, June 19

Derbyshire Backpack Giveaway: Saturday, Aug. 7 

New Smyrna Beach

Butterfly Release: Monday, June 28, TBD

Rocking the Red event: Monday, June 28, TBD

 
Information will also be available at:

Job Fair: 10 a.m.-2 p.m. Saturday, June 12, at the Daytona State College New Smyrna Beach-Edgewater Campus, 940 10th St., New Smyrna Beach.

A recent study published by the American Medical Association showed funding disparities between sickle cell disease and cystic fibrosis, a comparable genetic disease that primarily affects white children.  

Although cystic fibrosis is estimated to affect 30,000 people in the United States, according to the  Cystic Fibrosis Foundation, and sickle cell 100,000, the study found research funding provided for cystic fibrosis was between seven and 11 times higher per patient. 

That sickle cell only affects Black people is a misconception, Griffin said.

“Because we have so many mixed loves now, because we have so many relationships … It’s not now a disease for just African Americans. It’s in all cultures,” she said. 

Lack of funding for new treatment options, lack of understanding in populations that may carry the genetic traits that can lead to sickle cell disease — even misunderstandings by hospital personnel — are more reasons education is so important, Griffin said.

As part of her charity work, which until recently she did while teaching at an elementary school full time, Griffin advocates for her clients when they enter the hospital system. 

She saw firsthand how important that advocacy was when an organization she worked for previously lost its leadership, and there was a gap in services.

“Because I was the lead case manager, it became a part of my life. I went to the hospitals, and some of our clients had actually died, who had not even reached 40 yet,” Griffin said. “So it became a lifelong journey for me. Not only that, it hits home personally.”

“It’s so important that you know your status,” she added.

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