Story told by Mandy McWherter
“I’m 40 years old, and I have hemoglobin SS – which is a very severe form of sickle cell anemia,” said Erica Hunter from Laurens, South Carolina, as she describes the inherited blood disorder that necessitates frequent blood transfusions. “I was two years old when I was first diagnosed.”
Sickle cell disease distorts soft and round red blood cells and turns them hard and crescent-shaped, which can cause patients to experience extreme pain and face life-threatening complications. In the U.S., it is estimated that over 100,000 people have sickle cell disease, and they may require regular blood transfusions throughout their lifetime.
“As a child, I was in the hospital more than I was home. I was hospitalized at least two weeks out of every month until I started high school. I had a social worker who helped me try to stay on track with my school work. I got a little bit better through high school and didn’t get sick again until my sophomore year in college. After I graduated from college, things started to go downhill all over again,” Erica details her lifelong battle with sickle cell anemia. “I ended up hemorrhaging from a complication from sickle cell anemia. After I had my daughter, I had a stroke, and ever since, I receive monthly apheresis or a full blood exchange of up to 10 units of blood. That means I personally need 8-10 people who are willing to donate every month in order for me to live my life.”
Blood transfusions are essential in managing the pain and long-term health of those with sickle cell disease, and blood donations 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 most people with sickle cell are of African descent, blood donations from Black individuals are critical in helping those suffering from this disease.
“The closer I get to treatment, I feel very sluggish, increased pain levels, and fatigued. When I get the full blood exchange, it’s almost like I’m a brand new person,” Erica describes how she feels after receiving a blood transfusion. “I don’t really know how it feels to feel normal, but normal for me is I’m more energetic, have less pain, and I don’t feel like I have sickle cell for a little while.”
One treatment a patient should not have to worry about is the availability of a closely matched blood product to help save their life. The need for blood is constant. Someone in the U.S. needs blood every two seconds.
“I usually receive between 8 and 10 pints of blood every three or four weeks. During the blood crisis last winter, I could only receive three to four pints, and it was pushed out to every six weeks. Of course, my body hadn’t gotten used to the change,” Erica shares how she had to wait for the blood she desperately needed to feel well during the national blood crisis in January. “I could feel the difference in pain, my energy levels, and my overall well-being. The blood crisis pushed me to advocate more and reach out to more people to explain the importance of donating blood.”
During Sickle Cell Awareness Month, the American Red Cross emphasizes the importance of a diverse blood supply to help meet the needs of those with sickle cell disease. Sickle cell disease is an enduring – and often invisible – health disparity in the U.S. Despite the discovery of this disease more than a century ago, people with sickle cell disease have less access to health resources and experience worse health outcomes than other similar diseases.
“I’m a co-founder of Sickle Cell Lights of Hope, a patient-led advocacy organization. People don’t really understand the need for blood unless a loved one of theirs is a recipient,” Erica emphasizes the need for Sickle Cell awareness. “When I speak out and share my story, I can put a face to the issue and show people this is who you’re helping. When people donate blood, they enable me to be a present parent to my child.”
In recent years, the American Red Cross did not have enough blood donations from donors who are Black to provide the most compatible products to meet the treatment needs of patients with sickle cell. Unfortunately, COVID-19 further exacerbated the challenges of collecting enough diverse blood donations.
“I want people to understand what sickle cell is. It’s a matter of life or death. I want people to know that you can have sickle cell anemia, but sickle cell does not have you. That’s my motto: I have sickle cell anemia, but sickle cell does not have me. I will fight until the very end – until my very last breath.”
The disproportionately high COVID-19 infection rates in the Black community, hospitalization, and fatalities within Black communities have deterred many donors from giving, and the cancellation of drives at educational institutions and businesses, where most of these donors give, has caused the number of Black individuals who give blood to drop by about half. Those are daunting facts for people like Erica, who rely on blood transfusions.
“I have my good days and my bad days, but I just try not to let my bad days outweigh my good days. Fortunately, my sickle cell disease is controlled by my monthly treatment. I haven’t had to be hospitalized for the past two years while I do apheresis,” Erica gratefully shares what apheresis means for her livelihood. “To all those who give blood: thank you! Thank you not only for me but for my child as well. Even though she’s only 10, she wants to donate blood. She understands that mommy needs blood to live.”
Launched in 2021, the American Red Cross Sickle Cell Initiative seeks to reach more blood donors who are Black to help patients with sickle cell disease and improve health outcomes. The Red Cross asks members of the Black community to join with us and our partners to help meet the needs of patients with sickle cell disease and other medical conditions to improve health outcomes. Please take action today and schedule a blood donation appointment by visiting RedCrossBlood.org, downloading the Blood Donor App, or calling 1-800-RED CROSS.