By Aaron Allen, The Seattle Medium
Sickle cell anemia is a blood disorder that disproportionately affects African Americans, but experts stress that greater awareness and knowledge of the condition can improve lives. Dr. Kristine Karvonen, a pediatric hematologist/oncologist at Odessa Brown Children’s Clinic at Seattle Children’s Hospital, emphasizes the importance of staying informed.
“It’s extremely important for us all to be informed about sickle cell anemia. I think that we need to be informed about any condition that may affect our community’s health and well-being, just like other conditions like diabetes or chronic heart disease,” says Dr. Karvonen. “We know that sickle cell is more common in African Americans. So, we have to be aware—knowledge is power. Being informed means that you can help a family member, a friend, or someone else in your community.”
Dr. Karvonen also highlights the significance of community support, encouraging individuals to donate blood or bone marrow to help expand the donor pool for patients in need of transfusions or bone marrow transplants. “Other things you can do to help your community include donating blood or bone marrow,” Karvonen adds. “That will help more patients receive blood transfusions and bone marrow transplants.”
KD Hall, whose nine-year-old daughter lives with sickle cell anemia, echoes Dr. Karvonen’s sentiments on the need for community awareness and openness in conversations surrounding the disorder.
“It’s important for the community to know about sickle cell from an awareness standpoint for themselves,” Hall says. “There might be people walking around with the trait and not even know. So I think, even if you don’t plan to have children, if you do have the trait, it’s important to know how to take care of your body.”
Sickle cell anemia is a serious condition in which red blood cells become rigid and sickle-shaped, obstructing blood flow and causing pain, organ damage, and a range of symptoms including anemia, fatigue, and jaundice. The Sickle Cell community often describes it as “sticky blood.” Pain episodes, known as vaso-occlusive crises (VOCs), can affect various parts of the body and lead to complications such as stroke, acute chest syndrome, organ damage, and even premature death.
Treatments for sickle cell anemia have advanced over the years, with options ranging from medications to blood transfusions and stem cell transplants. New gene therapies are also being developed, offering hope for more comprehensive treatment options in the future. Dr. Karvonen emphasizes the life-saving impact of these advancements.
“Thankfully, we have medicines that have really changed the game for people with sickle cell anemia. One example is hydroxyurea, a medicine that has significantly increased the lifespan of people with the condition,” says Karvonen. “These options deserve to be discussed with each person,” Karvonen says. “Because again, knowledge is power. Every patient with sickle cell deserves to know the treatments available to them.”
The disproportionate prevalence of sickle cell anemia among African Americans and those in Africa’s diaspora is rooted in genetics. The condition evolved as a genetic adaptation to malaria, a disease common in regions such as Africa, India, Central and South America, and the Mediterranean. “Sickle cell anemia was a way for the body to adapt to a serious blood infection called malaria,” Karvonen explains. “It’s not a disease that solely affects African Americans, but it disproportionately affects African Americans here in the United States.”
With increased medical advancements and broader awareness, people affected by sickle cell anemia are learning how to live longer, healthier, and more fulfilling lives.
“I think it’s very possible for people with sickle cell anemia to live long, healthy, and fulfilling lives,” says Karvonen. “That’s why my team works so hard to care for people with sickle cell. We believe patients with sickle cell anemia have the right to live normal, long, healthy, fulfilling lives.”
Support systems play a crucial role in the day-to-day management of sickle cell anemia, helping mitigate the physical and emotional toll the condition can take. Whether it’s through proper diet and exercise, family and friends, or medical professionals, these support networks make the journey to longevity less daunting.
“I think as part of the team, people with sickle cell anemia can stay knowledgeable and use the support system they have in place,” says Karvonen. “And I don’t just mean the medical team—I mean your family, your friends, your whole support system.”
For people with sickle cell anemia, maintaining good health involves staying informed, following a healthy lifestyle, and accessing the right resources.
“Patients with sickle cell anemia have a lot of things in their control,” Karvonen continues. “That includes some of the basics—eating well, treating your body well, exercising, and staying active.”
Hall also stresses the importance of testing and education to normalize the conversation about sickle cell anemia, making people more aware of the condition.
“I think it’s just good to be tested,” Hall says. “And if you do happen to have a child, or if you’re a teacher or coach and you have a kid on your team, the more you know about sickle cell, the more you can normalize having those conversations. Being tested and learning more helps make sure they don’t feel alone.”