Learn about this condition that affects our communities at higher rates and discover resources for support.
Sickle cell disease (SCD) is an inherited blood disorder that causes red blood cells to form a sickle, or crescent, shape. These cells are stiff and sticky, which makes it harder for them to carry oxygen and move through the body.
When these sickled cells block blood flow, it can lead to intense pain, infections, strokes, and organ damage.
SCD primarily affects people of African descent, though it also occurs in people from the Caribbean, the Middle East, Central and South America, and parts of India.
Symptoms can start in infancy and may vary from person to person. Some people experience frequent pain crises, while others may have milder symptoms.
Because symptoms can mimic other conditions, it’s important to advocate for blood tests and imaging if something doesn’t feel right.
Living with asthma? Our community member, Eriel, knows a thing or two about managing flare-ups or asthma attacks.
Here are a few factors that might put you at risk for Sickle cell disease:
While there’s no universal cure yet, people with SCD can live full lives with the right support, monitoring, and medical care.
While there’s no universal cure yet, people with SCD can live full lives with the right support, monitoring, and medical care.
Common types of blood pressure medications include:
We read the online discourse on sickle cell disease and found that our community is looking for:
People living with sickle cell often encounter HCPs who lack a full understanding of their condition’s complexities, leaving many surprised to discover they must educate providers just to receive basic care.
For many, the journey to find effective treatment often involves navigating options like hydroxyurea, voxelotor, and crizanlizumab. Each treatment offers potential benefits, but individual responses can vary widely, making it a process of trial and error that is both physically and emotionally challenging.
Pain crises can disrupt work, relationships, and social activities, causing feelings of isolation and fear that are difficult to share with others who may not understand. The lack of understanding from both social circles and HCPs deepens this impact, as people often feel they must hide or minimize their condition.
Many people face significant financial hurdles in accessing essential care, navigating complex systems for disability benefits and insurance. Long wait times for Social Security Disability Insurance (SSDI) approval, repeated denials, and restrictive eligibility criteria make it challenging to secure necessary support.
Many people with sickle cell disease live active, fulfilling lives. Explore resources below.
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Many people with sickle cell disease live active, fulfilling lives. Explore resources below.
