Center For Disease Control: Sickle Cell Disease: 10 Things You Need to Know

How much do you know about sickle cell disease? Read below to find out 10 things you need to know about one of the most common genetic diseases in the United States.

1. Did you know that African Americans are not the only people who get sickle cell disease? Sickle cell disease affects millions of people throughout the world and is particularly common among people whose ancestors come from sub-Saharan Africa, Spanish-speaking regions in the Western Hemisphere (South America, Cuba, and Central America), Saudi Arabia, India, and Mediterranean countries such as Turkey, Greece, and Italy. Because of this, hospitals in the United States screen all newborn babies for sickle cell disease.

2. Did you know that it's important to know whether or not you have sickle cell trait? People with sickle cell trait usually do not have any of the symptoms of the disease.However, it is possible for a person with sickle cell trait to have complications of the disease under extreme conditions, such as:

• High altitude (flying, mountain climbing, or cities with a high altitude)

• Increased pressure (scuba diving)

• Low oxygen (mountain climbing or exercising extremely hard, such as in military boot camp or when training for an athletic competition)

• Dehydration (too little water in the body)

In addition, a person with sickle cell trait can pass the disease on to their children.

3. Did you know that people with sickle cell trait are less likely to get malaria? People with sickle cell disease can get malaria just like anyone else. However, people with sickle cell trait are less likely to get malaria. The trait doesn't completely protect a person from infection, but it makes death from malaria less likely.

4. Did you know that a pain “episode” or “crisis” is the most common symptom of sickle cell disease and the top reason that people with the disease go to the emergency room or hospital? When sickle cells travel through small blood vessels, they can get stuck and clog the blood flow. This causes pain that can start suddenly, be mild to severe, and last for any length of time.

5. Did you know that a woman with sickle cell disease can have a healthy pregnancy? Women with sickle cell disease can have a healthy pregnancy, but need to be extra careful to avoid problems during pregnancy that can affect their own health and the health of the unborn baby. The disease may become more severe and pain episodes may occur more frequently. There is a higher risk of preterm labor and of having a low-birthweight baby. However, with early prenatal care and careful monitoring throughout pregnancy, women with sickle cell disease can have a healthy pregnancy. During pregnancy, there is a test to find out if the unborn baby will have sickle cell disease, sickle cell trait, or neither one. The test is usually conducted after the second month of pregnancy. Women with sickle cell disease might want to see a genetic counselor to find information about the disease and the chances that sickle cell disease will be passed to the baby.

6. Did you know that there are different types of sickle cell disease? There are several different types of sickle cell disease. People who inherit two sickle cell genes, one from each parent, have a type of sickle cell disease called SS. This is commonly called “sickle cell anemia” and is usually the most severe form of the disease. People who inherit a sickle cell gene from one parent and a gene for another type of abnormal hemoglobin (hemoglobin is a protein that allows red blood cells to carry oxygen to all parts of the body) from the other parent, have a different type of sickle cell disease. Some types of sickle cell disease are very severe and some are milder. The disease affects each person differently.

7. Did you know that there is a cure for sickle cell disease? Even though bone marrow/stem cell transplant is hailed as a cure for sickle cell, there is no universal cure! Bone marrow is a soft, fatty tissue inside the center of the bones where blood cells are made. A bone marrow/stem cell transplant is a procedure that takes healthy cells that form blood from one person - the donor - and puts them into someone whose bone marrow is not working properly. Bone marrow/stem cell transplants are very risky, and can have serious side effects, including death. For the transplant to work, the bone marrow must be a close match. Usually, the best donor is a brother or sister. Bone marrow/stem cell transplants are used only in cases of severe sickle cell disease for children who have minimal organ damage from the disease.

8. Did you know that people with sickle cell disease need to have their vision checked more often that people who do not have sickle cell disease? Vision loss, including blindness, can occur when blood vessels in the eye become blocked with sickle cells and the retina (the thin layer of tissue inside the back of the eye) gets damaged. People with sickle cell disease should have their eyes checked every year to look for damage to the retina. If possible, this should be done by an eye doctor who specializes in diseases of the retina. If the retina is damaged, laser treatment often can prevent further vision loss.

9. Did you know that there are a lot of things that a person with sickle cell disease can do to avoid some of the complications?

People with sickle cell disease can live full lives and enjoy most of the activities that other people do. There are things that people with sickle cell disease can do to stay as healthy as possible. Here a few examples:

• Get regular checkups. Regular health checkups with a primary care doctor can help prevent some serious problems.

• Prevent infections. Common illnesses, like the flu, can quickly become dangerous for a child with sickle cell disease. The best defense is to take simple steps to help prevent infections. See tips to help prevent getting an infection.

• Learn healthy habits. People with sickle cell disease should drink 8 to 10 glasses of water every day and eat healthy food. They also should try not to get too hot, too cold, or too tired.

• Look for clinical studies. New clinical research studies are happening all the time to find better treatments and, hopefully, a cure for sickle cell disease. People who participate in these studies might have access to new medicines and treatment options.

• Get support. Find a patient support group or community-based organization in your area that can provide information, assistance, and support.

10. Did you know that people with sickle cell disease should get vaccinations? People with sickle cell disease, especially infants and children, are more at risk for harmful infections. Pneumonia is a leading cause of death in infants and young children with sickle cell disease. Vaccinations can protect against harmful infections.

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