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'Sickle cell disease is a blood disease. It's not a Black disease.' The misconceptions surrounding SCD.

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Posted at 5:48 PM, Sep 13, 2022
and last updated 2022-09-13 18:48:03-04

NASHVILLE, Tenn. (WTVF) — "Sickle cell disease is a blood disease. It's not a Black disease," reminds Dr. Lemetra Scott.

Scott is on a mission to educate and empower. The Nashville pharmacist began advocating for sickle cell disease awareness after giving birth to her son in 2012.

Scott didn't know she and her son's father carried the sickle cell trait, and they unknowingly passed the disorder to her son. He was diagnosed with sickle cell disease type SS, a disorder that causes blood clots and can result in blocked blood flow, extreme pain, stroke and other serious medical problems.

Storm 5 Meteorologist Henry Rothenberg sat down with Scott to learn more about the disease ahead of the 2nd Annual Sickle Cell Warrior Walk & Run, which Henry will emcee on September 17.

According to the National Heart, Lung, and Blood Institute sickle cell disease (SCD) is the most common inherited blood disorder in the United States, affecting approximately 100,000 Americans.

SCD is inherited: two people who carry the sickle cell trait have a 25% chance of passing the disease on to their child. One out of every 365 Black or African American babies is born with SCD, while one in 12 is born with the sickle cell trait.

"When you put that into context, and you look at the number of sickle cell traits carriers there are in the world, there are about two million people who carry the trait for sickle cell disease and don't know it," Scott explained. "That's important because people who are sickle cell trait carriers and don't know it — they can pass that trait on to their future generations, and that is where we have the problem of more babies being born with sickle cell disease."

Although SCD is most common among African Americans, it can also affect the Hispanic population and people whose ancestors come from countries in South Asia, southern Europe, and the Middle East.

"If you go back in history and look at the prevalence of where the sickle cell trait shows up, it actually follows areas that were endemic to malaria," Scott said. "So, when those people go on and have children, they carry their traits with them. Now, that means people who are of non-African American descent are sickle cell trait carriers. When two of those people have a child together, they have that same 25% chance of having a child that has sickle cell disease."

It's misconceptions about whom SCD impacts and stigmas surrounding the disorder that inspired Scott to form the Breaking the SSickle Cell Cycle Foundation. On Saturday, September 17, the foundation is hosting the 2nd Annual Sickle Cell Warrior Walk/Run at Shelby Park in East Nashville.

Scott encourages anyone and everyone to show up and support the cause.

"It's all about community," she said. "Whether or not you have sickle cell disease, whether or not you're a sickle cell trait carrier, it's all about community. We need that rallying support for patients and families who are battling with sickle cell disease on a day-to-day basis — they need to know that the community is behind them so they don't have to feel like they're suffering in silence, or that they have to be ashamed of their condition. That's what you're doing when you come out to support a sickle cell 5K walk."

The event starts at 8 a.m. at Shelby Park in East Nashville at the River View Shelter. You can also learn about your sickle cell status because Meharry Sickle Cell Center is offering free testing at the event.

"Get educated; get empowered," Scott said. "Once you become educated about sickle cell disease, you recognize where your deficiencies are, you recognize where your own personal biases are. And that should empower you — empower you to change the status quo."

Learn more about Breaking The SSickle Cell Cycle Foundation, Inc at btsscycle.org. Register for the 2nd Annual Sickle Cell Warrior Walk/Run here.