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The Silent Carrier: Living with Sickle Cell Trait



One to three million people in the United States carry the sickle cell trait, with eight to ten percent of them being of African American descent. Surprisingly, many individuals remain unaware of their status until a diagnosis catches them off guard. This reality hits close to home for the American Red Cross Central West Alabama region’s Executive Director, Tomalisa Washington, who was shocked to learn that her daughter carries the sickle cell trait.


Nailah Grace was Tomalisa’s “miracle” baby, a term often used to describe babies who have been conceived against all odds. These babies are viewed as symbols of hope, resilience and the power of perseverance in the face of adversity; like most new parents, she and her husband were overjoyed to bring their baby home and start making memories. But a few months later, Tomalisa’s newfound joy was shaken when they received a letter from the Sickle Cell Disease Association of West Alabama asking them to make a consultation appointment for her daughter’s condition. “We were told by the doctors that we could not conceive, so to think that this finally happened, and then that she might have this condition, that was really a terrifying time for us.”


Tomalisa assumed the letter was a mistake; she wasn’t aware of anyone in her family who had the sickle cell trait, and the doctors didn’t mention anything at the hospital, so she ignored the letter. “My thinking was, if my daughter had sickle cell trait, then that obviously meant one of her parents had it, and since I had no knowledge of that, I just kind of tossed the letter to the side.” A few weeks later, she received a call asking her to schedule a counseling session to discuss her daughter’s condition and was assured that the letter was not a mistake.


Tomalisa’s heart sank when she learned that tests had confirmed that her precious three-month-old daughter was carrying the sickle cell trait. Her mind raced as she imagined the pain that her daughter might endure. She didn’t know what to do or where to turn for help. She notes, “In my life, I’ve known patients with sickle cell, and they didn’t have a good quality of life.”


Fortunately, Tomalisa learned that carrying the sickle cell trait doesn’t necessarily mean suffering debilitating pain. She was relieved to learn that Nailah Grace would live a healthy, reasonably normal life but would need to remain mindful of a few things:


Not overheating, staying hydrated when exercising, being careful at high altitudes and most importantly, Nailah Grace will need to have intentional discussions with her future partner about her condition and what it could mean for their children.  Although the family was relieved, they were still confused how this could happen. How could their baby have sickle cell trait when the parents did not?


A little-known fact is that sickle cell disease and carrying the sickle cell trait have vastly different outcomes. People with sickle cell trait carry only one copy of the altered hemoglobin gene and rarely have any clinical symptoms related to the disease. In contrast, people with sickle cell disease carry two copies of the altered hemoglobin gene. Those living with sickle cell disease have sickle-shaped cells that lead to extreme pain and early cell death.  According to the CDC, sickle cell disease affects nearly 1 out of 365 Black or African American births. Nearly 1 out of every 12 African Americans and 1 out of every 100 Latinos carry the sickle cell trait. That’s more than 100 million individuals globally that carry the sickle cell trait. Many of these individuals are unaware of their status as carriers, which is why the Red Cross launched its sickle cell awareness campaign in 2021. Since its launch, first-time African American blood donors have nearly doubled across the country and more than 138,000 sickle cell trait screenings have been provided to donors. This work is critical in building partnerships and increasing awareness in Black and Latino communities.


Tomalisa leverages her experience and voice to help advocate for those living with sickle cell disease. As a board member of the Sickle Cell Association of West Alabama for seven years, she emphasizes the critical importance of parental education, “If you don’t know, you don’t know to have that conversation,” she notes.


Sickle cell disease, incurable to date, brings a lifetime of pain, anemia and heightened stroke risk. Tomalisa uses her platform to shed light on the dire need for blood donations, particularly from African American donors who provide a higher match for patients. “Fear of needles or assuming someone else will donate is like having a lifejacket on a boat and turning your back on someone drowning. It’s no excuse.” She challenges us to confront our fears and excuses, reminding us that our actions can mean the difference between life and death for someone in need.


Tomalisa and her family’s story serves as a poignant reminder of our collective responsibility. If faced with a loved one in dire need of a life-saving transfusion, wouldn't we all hope for someone to step forward? Let's seize the chance to be a lifeline and become someone's beacon of hope. Be someone’s miracle.

 

 


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