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What is sickle cell disease?
It's a type of inherited blood disorder. People with sickle cell disease have abnormally shaped red blood cells that are hard and sticky, causing the cells to get stuck as they travel through the body. This can cause recurring pain, infections, lung complications, and other serious problems.
What is sickle cell trait?
Sickle cell trait isn't the same as sickle cell disease. If you carry it, you won't have symptoms. But if you have a baby, and your partner has sickle cell trait too, your baby has a 1 in 4 chance of getting sickle cell disease.
About 1 in 13 African Americans has sickle cell trait. The gene is also common among people whose ancestors came from South America, the Caribbean, Central America, Saudi Arabia, India, and Mediterranean countries such as Turkey, Greece, and Italy.
Sadly, many people who carry the sickle cell gene don't know it. For example, a study in 2016 found that most young African American adults were unaware of their sickle cell trait status.
Too often, parents don't find out they carry sickle cell trait until their baby is diagnosed with sickle cell disease. A recent article by Amber Yates, codirector of the Texas Children's Sickle Cell Center at Texas Children's Hospital, told the tragic story of one couple's shock when their 4-week-old infant screened positive for the disease. It turned out that the baby's grandmother knew the mom had sickle cell trait but had never told her.
How do I find out if I have sickle cell trait?
Genetic carrier screening can test you and your partner for sickle cell trait, along with genetic mutations for other serious inherited disorders such as cystic fibrosis and Tay-Sachs disease.
Ideally, you want to find out your sickle cell status before you conceive, so you can make an informed decision before trying to get pregnant. But even if you get screened during pregnancy, the results can give you time to talk to a genetic counselor about the chance of your baby having a disorder and about the opportunity to order additional testing.
As Yates points out: "Knowledge is power … Knowing your sickle cell status allows key conversations to occur in advance so fewer families say, 'We didn’t know this could happen.'"
Get more information about sickle cell trait during September, which is National Sickle Cell Awareness Month. Resources for African American women are also available.
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