WHAT SHOULD FUTURE PARENT KNOW?

• People who are planning to become parents should know whether they are carriers of the sickle cell gene, and, if they are, they may want to seek genetic counseling. The counselor can tell prospective parents what the chances are that their child will have sickle cell trait or sickle cell anemia. Accurate diagnostic tests and information are available from health departments, neighborhood health centers, medical centers and clinics that care for Individuals with sickle cell anemia. 

SICKLE CELL DISEASE IN AN UNBORN BABY

Yes. By sampling the amniotic fluid or tissue taken from the placenta, doctors can tell whether a fetus has sickle cell anemia or sickle cell trait. This test can be done as early as the first trimester of pregnancy.

Chorionic Villus Sampling is also another prenatal test. Chorionic villus sampling or CVS is a test done during early pregnancy that can find certain genetic problems with the fetus. The test is commonly done when either you or the baby biology father has a disease that runs in the family. The test can be done as early as 10 to 12 weeks. You should consult with your physician for further information.

COPING AND SUPPORT

• It's especially important to find ways to control — and cope with — pain. Different techniques work for different people, but it might be worth trying heating pads, hot baths, massages or physical therapy. Prayer, family and friends also can be sources of support.
• If you have a child with sickle cell anemia, learn as much as you can about the disease and make sure your child gets the best health care possible. A child with sickle cell disease has special needs and requires regular medical care. Your doctor can explain how often to bring your child for medical care and what you can do if he or she becomes ill.

FUTURE TREATMENT

• Some scientists are looking into whether correcting this gene and inserting it into the bone marrow of people with sickle cell anemia will result in the production of normal adult hemoglobin. Others are looking at the possibility of turning off the defective gene and simultaneously reactivating another gene that turns on production of fetal hemoglobin. In both cases, the research is at a very early stage. Progress is being made, however, and there is a real possibility of an eventual clinical cure for sickle cell anemia. 

CURE

TREATMENT

• Bone marrow transplant offers the only potential cure for sickle cell anemia. But, finding a donor is difficult and the procedure has serious risks associated with it, including death.
• As a result, treatment for sickle cell anemia is usually aimed at avoiding crises, relieving symptoms and preventing complications. If you have sickle cell anemia, you'll need to make regular visits to your doctor to check your red blood cell count and monitor your health. Treatments may include medications to reduce pain and prevent complications, blood transfusions and supplemental oxygen, as well as bone marrow transplant.

HOW LONG PEOPLE WITH THIS DISEASE LIFE?

With good health care, many people who have sickle cell anemia can live productive lives. They also can have reasonably good health much of the time and live longer today than in the past. Many people who have sickle cell anemia now live into their forties or fifties, or longer.

If you have sickle cell anemia, it's important to:

• Take steps to prevent and control complications
• Learn ways to cope with pain