Sickle cell disease and race: what to know

The inherited gene changes linked with sickle haemoglobin are more common in people whose ancestry includes sub-Saharan Africa, the Middle East, India or Mediterranean regions. This reflects population history and inheritance, not a biological boundary between races. People who identify with the same race can have different family origins and different haemoglobin genes.

Sickle cell trait and sickle cell disease are different. A person with the trait may have no symptoms, while disease can cause episodes of joint pain, fatigue or pale skin. Symptoms alone cannot determine which haemoglobin pattern is present.

If you have a family history, come from a region where the trait is more common, or want information before pregnancy, ask about a blood test. Testing can identify the haemoglobin pattern and guide appropriate counselling. Premarital screening is another setting in which couples may discuss inherited blood conditions with a qualified professional.

Seek urgent medical help for severe pain, fever, chest pain, breathing difficulty, confusion, fainting or sudden weakness. These warning signs should be assessed promptly whether or not a person has had testing and regardless of racial or ethnic identity.

Ask which haemoglobin test is appropriate, how results distinguish trait from disease, and whether a relative should be tested. If pregnancy is being considered, ask about partner testing and genetic counselling.