Sickle cell disease is a genetic condition caused by unhealthy and abnormal red blood cells. Instead of being soft and round, these red blood cells are hard and sticky, and shaped like a “sickle.” These unhealthy cells clog up blood vessels and reduce good oxygen flow, creating serious problems of intense pain, infections and more.
It’s an inherited disease – meaning the genes were passed down to you from your parents, at birth. To have SCD, you have either inherited two sickle cell genes, or one sickle cell gene and a different type of “abnormal hemoglobin” gene from your parents. Often, parents aren’t aware that they carry the sickle cell gene or sickle cell trait, and sickle cell disease comes as a bit of a surprise after the baby’s born. Today in the US, screening automatically happens at birth to check for SCD.
SCD runs in families, but SCD is also more common in certain ethnic groups.
Americans have SCT
is not a disease (but it can still bring complications)
you inherited the gene from only one of your parents
of African Americans have SCT but it also affects other groups — including South Asians, Hispanics, Middle Easterners and Caucasians from southern Europe.
There are several types of sickle cell disease, although some are more commonly known:
People who have this form of SCD inherit two sickle cell genes (“S”), one from each parent. This is commonly called sickle cell anemia and is usually the most severe form of the disease.
People who have this form of SCD inherit a sickle cell gene (“S”) from one parent and from the other parent a gene for an abnormal hemoglobin called “C”. Hemoglobin is a protein that allows red blood cells to carry oxygen to all parts of the body. This is usually a milder form of SCD.
People who have this form of SCD inherit one sickle cell gene (“S”) from one parent and one gene for beta thalassemia, another type of anemia, from the other parent. There are two types of beta thalassemia: “0” and “+”. Those with HbS beta 0-thalassemia usually have a severe form of SCD. People with HbS beta +-thalassemia tend to have a milder form of SCD.
People who have these forms of SCD inherit one sickle cell gene (“S”) and one gene from an abnormal type of hemoglobin (“D”, “E”, or “O”). Hemoglobin is a protein that allows red blood cells to carry oxygen to all parts of the body. The severity of these rarer types of SCD varies.
Depending on the person and their specific type of SCD, there can be a wide range of health issues that stem from managing the disease. For example, you’ll often hear many warriors say that no two pain crises are alike and it’s hard to even describe how terrible they feel. Keeping in mind that not everyone will experience the exact same issue is key, but some of the biggest issues are:
or pain episodes
(lacking enough healthy red blood cells in the body)
Some issues can also turn life-threatening. For example, Acute chest syndrome – whose signs include chest pain, trouble breathing, coughing and fever – needs to be treated immediately at a hospital.
A news organization that provides information on all treatments for SCD to use when discussing treatment options with your physician or other qualified health provider.
Research, stories, and fact sheets from Sickle Cell Disease Coalition for current patients, caregivers, and medical professionals.
