Sickle cell disease (SCD) is an inherited blood disorder that affects the shape and flexibility of red blood cells. Instead of maintaining their usual soft, round form, the cells take on a crescent-like shape, which interferes with blood flow and can lead to serious health challenges. While it is a global condition, SCD is more common in people of African ancestry and other underrepresented communities, making it both a health concern and a matter of equity.

As a Brazilian researcher who has spent the last eight years studying this condition and working on strategies to improve patient well-being, I have witnessed many stories of people living with SCD facing difficulties when seeking medical attention. They are sometimes not taken seriously or misunderstood, which creates an additional burden on top of their physical symptoms. These experiences are not isolated and can deeply affect their lives.

Research from around the world supports this. For example, studies from the US and Brazil show that individuals with SCD often encounter challenges when accessing care or expressing their needs. These challenges can affect both adults and children and may result in a reduced quality of life. For instance, in a recent study, healthcare professionals reflected on how learning directly from individuals living with SCD helped them reframe their understanding and improve their responses. Educational events such as “Sickling is Not Seeking” show how dialogue and empathy can lead to real change in clinical settings.

I believe it is essential to create safe spaces where people living with SCD are not only heard but also lead conversations. Their experiences matter, and their insights are valuable. By working together, researchers, healthcare teams, and communities can co-create knowledge that leads to better outcomes and stronger support systems.

This is why I write: because voices like theirs need to be amplified. Understanding begins with listening. And the right question is not “Why are you still unwell?” but “How can we work together to improve your journey?”