Student spreads the word about sickle cell disease

World Sickle Cell Awareness Day observed each June 19th

By Eilene E. Guy, American Red Cross volunteer

The American Red Cross believes Black lives matter. That’s why it’s urgent that more Black and African Americans roll up their sleeves and donate lifesaving blood for those living with sickle cell disease.

Cleveland teenager Makenzie Nance is one of an estimated 100,000 people in the U.S. who have sickle cell disease (SCD). Some 90% of those are of African descent and roughly 1,000 babies are born with the disease each year.

Sickle cell disease is a hereditary condition that can be life threatening. It leads to anemia (a shortage of red blood cells), causing fatigue and possible damage to blood vessels and vital organs. It often causes severe pain that can last for hours or days; it can even lead to disabling strokes.

Makenzie was a preschooler when she first had a critically low hemoglobin level – which meant her red blood cells couldn’t carry oxygen from her lungs throughout her body. She needed a blood transfusion immediately.

And to be the most effective, that blood needed to come from someone of her own ethnicity, an African American.

“They told me there was a shortage of African American blood,” her mother, Demeatrice Nance, recalls. “It had to be flown in from somewhere else. That’s when I realized the importance of getting African Americans to donate blood.”

Thanks to Makenzie getting regular checkups and immediate attention when she gets so much as a common cold, the 17-year-old has only had two transfusions. “But we know friends who have to have transfusions every couple of months,” Demeatrice said.

Makenzie’s condition could change at any time, requiring more transfusions. A single patient with SCD can need up to 50-100 pints of blood each year.

The Red Cross, which collects about 40% of the nation’s blood supply, wants to be sure there’s plenty of blood to meet these very specific needs. In an all-out effort to fill the gap, the Red Cross is trying to triple the number of Black and African American blood donors by the end of December 2024.

SCD also affects people with ancestors from India, Central and South America, the Middle East, the Caribbean and Mediterranean nations such as Italy, Greece, France and Turkey.

Both Makenzie and her mom are active in recruiting blood donors. “African Americans just haven’t been educated about giving blood,” Demeatrice said. “ ‘Oh, I don’t like needles,’ or ‘Oh, they’ll take all my blood.’ We have to dispel all of that misinformation.”

Makenzie goes to high schools around Cleveland to educate her peers. And because she’s spent so much time in hospitals and doctors’ offices herself, she wants to go into nursing; she’s already a Certified Nursing Assistant with a goal of becoming a Registered Nurse.

Demeatrice regularly sponsors Red Cross blood drives which include information about SCD as well as team that can do finger pricks to screen for the trait that can lead to having a child with the disease.

“I’m all in,” for spreading the word about SCD, with the goal of early detection and plenty of blood for effective treatment, she said.

To learn more about SCD, go to RedCrossBlood.org/SickleCell.

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