The Importance of Knowing Your Sickle Cell Status: A Shared Responsibility
Marti Health
Improving the quality, consistency, and equity of health outcomes for the Sickle Cell Disease community and caregivers.
September is National Sickle Cell Awareness Month, and it’s the perfect time to talk about something that affects so many people—knowing your sickle cell disease (SCD) and sickle cell trait (SCT) status. This isn’t just a health issue for one group; it’s a matter that touches families and communities of all backgrounds.
Sickle cell disease is a genetic blood disorder that primarily impacts people of African descent, but it can affect anyone. In the U.S., more than 100,000 people live with SCD, and up to 3 million carry the sickle cell trait. But here’s a surprising statistic: despite nearly a decade of newborn screening programs, only 16% of childbearing-age individuals in the U.S. know whether they have SCT.(1) That’s a huge gap in awareness that can have serious consequences for both personal health and future generations.
So why is knowing your status so important? Many people with SCT don’t show symptoms, but they can still face health risks, especially in certain situations. Not being aware of having the trait could lead to complications like kidney issues or splenic infarction, which can be life-threatening. Plus, if parents don’t know their own SCT status, they might unknowingly pass the trait or disease to their children, creating a cycle of health challenges.
A recent study has highlighted another critical point: people with SCT are at a 1.45-fold increased risk of venous thromboembolism (VTE), a serious condition that can lead to significant complications. This risk doesn’t depend on race, which makes it even more vital for everyone to understand their SCT status.
So, what’s holding people back from knowing their status? There are several factors at play, from communication gaps between healthcare providers and families to social stigmas around genetic conditions. Despite newborn screening being available since 2006, many still don’t receive this crucial information, leading to a dangerous silence about sickle cell status.
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To change this, we need healthcare providers to communicate screening results clearly and effectively. Public health campaigns should work to educate all communities about SCT and its implications, dispelling myths along the way. Community leaders and influencers can also play a vital role in spreading the word and making sure accurate information reaches everyone.
In the end, knowing your sickle cell status isn’t just about you—it’s about empowering yourself and making informed decisions that affect your health and family planning. For those with SCT, awareness can mean the difference between staying healthy and facing unexpected complications.
As we embrace National Sickle Cell Awareness Month, let’s all commit to spreading the word about sickle cell disease and trait status. It’s a shared responsibility that can have a lasting impact on current and future generations. Remember, knowledge is more than just power; it’s a lifeline! Michael Vincent Smith, MD; Founder and CEO of Marti Health