Shedding light on Sickle Cell Disease

By Eilene E. Guy, American Red Cross volunteer

Sickle Cell Disease is hiding in plain sight, and La’Shardae Scott is determined to bring it into the spotlight.

Sickle Cell Disease (SCD) is the most common genetic blood disorder in the United States, afflicting some 100,000 people, primarily those of African descent. Every year, an estimated 1,000 babies are born with SCD.

During September, Sickle Cell Awareness Month, the American Red Cross is teaming up with SCD crusaders like La’Shardae to bring attention to this painful and life-threatening disorder.

The Scott Family: Eric, La’Shardae, Emory, Evan, Eric and Liam

La’Shardae has launched the nonprofit Scott Center for Observation, Treatment and Transition in Oregon, Ohio, to minimize infant mortality in populations of color and help families and individuals with SCD transition successfully from pediatric to adult care.

She’s well aware that people of color have a fraught history with the medical establishment, which leads to poor doctor-patient relationships. Even today, misconceptions persist about Black people’s tolerance for pain.

“Patients born with this condition don’t look ill; they learn to manage their pain, but that doesn’t mean it isn’t real,” she said. “So when they finally seek help, they get dismissed as drug-seeking and that leads to further complications.”

Screening of newborns for SCD is now routine in all 50 states, but too often parents — confronted with the sudden notice that their baby has an incurable condition — don’t know how to handle that reality as the child grows, La’Shardae said.

At her house, she relies on medications, appropriate diet and “hydration, hydration, hydration” to keep her two SCD “warriors,” eight-year-old Emory and Evan, 7, thriving. At the same time, she advocates for them when they experience the acute pain and other side effects typical of SCD. But she knows the damaging effects accumulate.

SCD causes red blood cells to take the shape of crescent moons or sickles. These misshapen cells don’t carry their full load of oxygen throughout the body, leading to anemia, pain “crises” and gradual damage to organs and tissues. Worse yet, the sickled cells tend to clump together, causing strokes.

Transfusions play a key role in “diluting” these defective cells in the blood stream, easing pain and slowing damage. Blood from one in three African American donors carries unique characteristics — antigens — that make it a close match for SCD patients.

This is where the Red Cross comes in. As supplier of more than 40% of the nation’s whole blood and blood products, the Red Cross needs a diverse donor population to meet the many unique transfusion needs.

Since launching its Sickle Cell Initiative in 2021, the Red Cross has seen a 60% increase in first- time African American blood donors to more than 45,000.

La’Shardae is working hard to boost that number. She uses social media platforms, Facebook Live and community presentations to educate and recruit. You can read all about her activities at scottcenteroh.org.

Her next event is the Scott Community Blood Drive in partnership with the Red Cross, from 9 a.m. to 2 p.m. Sept. 16 at 653 Miami St. in Toledo.

To register to give blood, go to redcrossblood.org, call 1-800-REDCROSS or use the free Red Cross blood donor app.

Edited by Glenda Bogar, Red Cross volunteer

Posted by Ryan Lang, Red Cross board member and volunteer

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