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| |    Myths & Truths about Sickle Cell Disease by Lewis Hsu, M.D., Ph.D. reviewed by Laura Jana, M.D., F.A.A.P. Myth: Only African Americans get sickle cell disease. Reality: Sickle cell is a disease that affects people of all different racial and ethnic backgrounds, including African, Arabian, Israeli, Greek, Italian, Hispanic, Turkish, and Pakistani. Although unlikely, it is entirely possible for a blond-haired, blue-eyed child of Northern European extraction to have sickle cell disease. For this reason, in most U.S. hospitals, all races now are screened at birth for the type of hemoglobin responsible for causing sickle cell disease. Myth: If our child has the disease, it means that she got the sickle cell gene from both my spouse and me. Reality: This is true for one form of the disease (known as HbSS), but there are other types in which only one parent has passed on the sickle cell gene and the other has passed on a gene for another type of anemia, such as thalassemia, that combine to produce sickle cell disease. Myth: I don't need to tell the doctors about my child having sickle cell trait, because this condition has no health implications at all. Reality: Although it is a rare occurrence, sickle cell trait can cause bleeding from the kidneys. And under extremely severe conditions--at the limits of human endurance, such as military desert-survival training or exercise at high altitude, for example--people with the trait can develop the same health problems as someone with sickle cell disease. Also, when your child grows up, if she and her spouse both have sickle cell trait, they should be aware that their children could be born with sickle cell disease. Myth: People with sickle cell disease cannot get malaria. Reality: People with sickle cell disease can contract malaria, and may either die or suffer through it and survive, just like anyone else. However, people with sickle cell trait tend to be more resistant to malaria-the trait doesn't completely protect a person from infection, but it makes death from malaria less likely. This survival advantage is believed to explain the worldwide pattern of sickle cell in many peoples who frequently are exposed to malaria, such as those who live in sub-Saharan Africa, around the Mediterranean, and on the Indian subcontinent. Myth: Nothing has changed in sickle cell treatment. It's the same for my child as it was for my uncle who died at a young age of sickle cell 30 years ago. Reality: Sickle cell treatment now is greatly improved from 30 years ago--or even 5 years ago.
Myth: All of sickle cell care is medical in nature and administered by doctors and other healthcare workers. Nothing is under our control as a family. Reality: Actually, there's quite a bit a family can do to care for a child with sickle cell. For one thing, families need to strike a balance between completely denying the presence of the disease, and living in a bubble. They can learn to recognize problems early on, when medical treatment often is more effective, and they can take precautions to ward off pain crises. Flexibility in responding to problems and building up a support system of friends and family can make a big difference in how much a child's life is affected by sickle cell. Myth: You can catch sickle cell disease from another person. Reality: Sickle cell is not contagious. It's strictly an inherited disease, and only people who are born with this genetic defect can develop it.
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