Tag Archives: SCD

Shedding light on Sickle Cell Disease

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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

Red Cross aims to increase African American blood donations to combat sickle cell disease and meet critical need

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By Eilene E. Guy, American Red Cross Volunteer

Recently, I was talking with visitors at a family health fair, explaining the always- urgent need for blood donations. I was especially targeting African-Americans, asking what they know about sickle cell disease.

Interestingly, their responses ranged from a blank look to, “Yes, I lost a cousin to sickle cell.”

Keith Lofton of Olmsted Falls at a recent blood drive in Rocky River

Apparently this is not unusual, which is why the American Red Cross is leading a national drive to raise awareness and recruit more blood donors who are Black. This is because their blood is uniquely suited to help patients with sickle cell disease live full and comfortable lives.

“As an organization dedicated to alleviating suffering, the Red Cross is committed to the health and well-being of all communities, and a diverse blood supply is critical to improving health outcomes for all patients – especially those with sickle cell disease,” said Gail McGovern, CEO and president of the Red Cross. “For someone facing a sickle cell crisis, a blood transfusion can make a lifesaving difference.”

Sickle cell disease (SCD) 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.

In the U.S., it’s estimated that more than 100,000 people have SCD and roughly 1,000 babies are born with the disease every year. SCD knows no national boundaries, which is why June 19 is designated World Sickle Cell Day.

Blood transfusions from individuals of the same race or similar ethnicity and blood type are the most effective way to help patients experiencing a sickle cell crisis. Since the majority of people with sickle cell are of African descent, blood donations from Black individuals are critical in helping those suffering from this disease.

Sabrina Spikes works full time for the Red Cross to rally African-American civic and faith-based organizations to recruit and educate.

“It’s vital that we get the word out as much as possible, to get more blood donors who are Black,” she said. “Here in northern Ohio, we’ve seen an increase (in donor numbers), but we still have work to do. Especially in the summer, when blood donations tend to fall off.”

In addition to recruitment, Sabrina’s other priority is education: preparing potential donors for a successful experience at a blood drive.

“Preparation is key,” she said. “Drinking plenty of water and eating iron-rich foods is important. And cutting out caffeinated beverages — coffee, tea, sodas — that slow the absorption of iron helps cut the deferral rate of donors, especially African-American women.”

Sabrina herself carries the trait for sickle cell, although she does not have the disease. It was important for her to know that: If the father of her three children had also had the trait, the children would suffer from the life-long condition. Sadly, too many babies are born with SCD.

The need for blood is not limited to patients with sickle cell disease. Every two seconds someone in the U.S. needs a blood transfusion, including women or girls experiencing childbirth complications, people fighting cancer, surgery patients and accident victims.

Bridget C. Miller Harper of Cleveland at the Browns Blood Drive in July, 2021

Fifty-one percent of people who are Black have type O (positive or negative) blood, in comparison to approximately 45% of white individuals. Type O blood is most often needed by hospitals to help patients, so donors who are Black play a critical role in meeting the constant need for blood.

Blood products have a limited shelf l-life and volunteer donors are the only source of blood and platelets for patients in need of lifesaving transfusions.

“My call to action is, schedule a blood donation appointment by visiting  RedCrossBlood.org, downloading the  Blood Donor App  or calling 1-800-RED CROSS,” Sabrina said.

Edited by Glenda Bogar, American Red Cross volunteer
Posted by Ryan Lang, American Red Cross volunteer and board member

Student spreads the word about sickle cell disease

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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.