By Aria Brent
AFRO Staff Writer
abrent@afro.com
Sickle cell disease (SCD) is an inherited disorder that affects over 100,000 people in the United States, according to the Sickle Cell Disease Association of America, of that number, the Centers for Disease Control and Prevention reports that “90 percent are non-Hispanic Black or African American, and an estimated 3–9 percent are Hispanic or Latino.”
Although there is no way of preventing the disease, being educated about your chances of carrying the sickle trait is extremely important– especially for people who are planning families.
Dr. Regina Crawford, a hematologist at the Ohio State University Wexner Medical Center recently spoke with the AFRO to explain how the disease works, how to get tested for it and why it affects the Black community at such a high rate.
AFRO: What is sickle cell disease and how does it affect the body ?
RC: Sickle cell disease is an inherited disorder. It’s not one that you acquire later in life or due to any other reason. You get one affected gene from each parent and that’s why there are folks who are carriers that have this disorder. It affects the body because of the mutation that happens at the genetic level. The red blood cells that carry oxygen in the body become very sticky where they normally are flexible– like a jelly bean. And while the normal red blood cells carry oxygen to different tissues, the sickle cell can get trapped in very small vessels like in the lungs, kidneys and the eyes. And because of them being trapped it can cut off the blood supply, causing damage to the surrounding tissues in that organ. Particular areas like the back, the pelvis, the arms and shoulders can deal with a cut off of blood supply, causing a lot of pain.
AFRO: Why does this disease affect Black people at such a disproportionate rate, as opposed to their White counterparts ?
RC: Sickle cell came about as a defense against malaria and the highest regions and concentrations of this are in Mediterranean and African areas, along with areas in the Middle East where malaria is still pretty rampant. It was nature’s way of adapting to it in an attempt to not die off as easily. However, as people migrate to different areas of the world that genetic condition goes with them and if two people who are carriers happen to marry or meet up, their children can have the disease.
AFRO: Can you explain the genetic biology of sickle cell disease ? If my partner and I were to both carry the gene, but neither of us have sickle cell disease, how does our child end up with it ?
RC: If both parents are carriers of genes, there is a certain percentage chance that with each pregnancy the child has a chance of not having the disease, being a carrier or ending up with the disease. And that’s with each child and that’s why one person can be affected with sickle cell disease in the family, but everybody else is okay; or everyone can have the disease and it’s one person that doesn’t have it, or is a carrier.
The chances are there with each pregnancy and so that’s how the parents don’t have the symptoms of the disease, because they’re carriers.
AFRO: How vital is blood testing when trying to make yourself more aware of you or your child’s likelihood of having sickle cell ?
RC: Blood testing is very vital. Here in the U.S., most states do newborn screenings of all infants and that’s how it’s usually picked up. Either that or shortly after birth. Some are done in the prenatal testing panel and that’s how it’s picked up in early childhood or newborn periods. If you’ve come from overseas or don’t remember testing as an adult, the ideal test to get when you’re older is a hemoglobin electrophoresis. It’s a type of test that separates out the different blood hemoglobins and that can tell you if you’re normal, have the sickle cell trait or have one of the variants. Some of the tests can pick up other variant hemoglobin at that time. There are other blood tests as well that are helpful in picking up just sickle cell, but it doesn’t tell you what variant you have. And that’s why it’s actually very important that hemoglobin electrophoresis is done– they’ll tell you exactly what you have.
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