Physician takes notes while talking with patient

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If you don’t know about sickle cell disease, you should. According to the National Heart, Lung and Blood Institute (NHBI), 1 in 13 people who identify as African Americans or have AA ancestry are born with the sickle cell trait; 1 in 365 have sickle cell disease (SCD). Many people have heard about the condition, and its debilitating affects. Celebrities such at Tionne “T-Boz” Watkins of TLC and Mobb Deep’s Prodigy have used their voices to raise awareness. Sickle cell “describes a group of inherited red blood cell disorders. People with SCD have abnormal hemoglobin, called hemoglobin S or sickle hemoglobin, in their red blood cells, which carries oxygen through the body,” reports NHBI.

“People with sickle cell disease can live full lives and enjoy most of the activities that other people do,” says Biree Andemariam, M.D., founder and director of the New England Sickle Cell Institute. “There are things people living with the disease can do to decrease the frequency of a crisis, including drinking 8 to 10 glasses of water every day and eating healthy food. They also should try not to get too hot, too cold, or too tired. And, they should limit their emotional stress or anxiety.”

The doctor breaks down the answers to common questions about the disease.

1 What should people know about sickle cell disease?

People of African ancestry have the highest prevalence of the disease, but the disease can affect anyone. It is also commonly seen in Latin America, as well as those from India, the Mediterranean or people of middle-eastern descent. Patients with sickle cell disease experience recurrent acute pain, infection and stroke (clinical and silent), chronic pain, and other severe complications, particularly when they are in “crisis”. In addition to the physical symptoms, living with sickle cell disease impacts patients both socially and emotionally—aspects which are often overlooked. Early diagnosis, ongoing patient education and awareness, medical care, including access to blood transfusions and hospital treatment can greatly improve patients’ length of life.

Sickle cell disease is hereditary. How do parents pass it to their children?

People with sickle cell disease have inherited two abnormal hemoglobin genes, one from each parent with the sickle cell trait. The red blood cells in sickle cell disease patients contain an abnormal form of hemoglobin, which is the oxygen-binding part of those cells. When these red blood cells fail to receive enough oxygen, they become shaped like a sickle, which leads to obstructions of blood vessels, a reduction in blood flow to vital organs and a weakened immune system.

3 Explain the difference between sickle cell disease and the sickle cell trait.

When someone has the sickle cell trait, it means they have inherited one sickle cell gene from a parent and one normal gene from the other. People with the trait have both normal red blood cells and some sickle-shaped red blood cells. Most people with the trait do not have any symptoms of sickle cell disease. Parents will sickle cell trait have a 50% chance of passing the gene on to their children with each pregnancy. If both parents have the trait the child is at risk of having the disease.

4 What should people know about the condition?

Typically, parents of babies born with sickle cell disease were unaware that they both carried the sickle cell trait. Sickle cell disease will impact patients for their entire lives and can affect nearly every organ.

5 How do you determine whether you have sickle cell trait, or if your child has sickle cell disease?

Your doctor can perform a blood test to determine if you carry the sickle cell gene. Regarding SCD, early diagnosis, ongoing patient education and awareness, simple medical care, including access to blood transfusions and hospital treatment greatly improve patients’ quality of life.