Living With Sickle Cell Anemia

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:

• Adopt or maintain a healthy lifestyle
• Take steps to prevent and control complications
• Learn ways to cope with pain

If you have a child or teen who has sickle cell anemia, you can take steps to learn about the disease and help your child manage it.

Adopt or Maintain a Healthy Lifestyle

To take care of your health, you should adopt or maintain healthy lifestyle habits.

Follow a healthy eating plan. Your doctor may suggest that you take folic acid (a vitamin) every day to help your body make new red blood cells. You also should drink at least 8 glasses of water every day, especially in warm weather. This will help prevent dehydration (a condition in which your body doesn't have enough fluids).

Your body needs regular physical activity to stay healthy. However, you should avoid exercise that makes you very tired. Drink lots of fluids when you exercise. Talk with your doctor about how much and what kinds of physical activity are right for you.

You also should get enough sleep and rest. Tell your doctor if you think you may have a sleep problem, such as snoring or sleep apnea. Sleep apnea is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep.

Talk to your doctor about whether you can drink alcohol and what amount is safe for you. If you smoke, quit. Talk to your doctor about programs and products that can help you quit smoking.

Take Steps To Prevent and Control Complications

Along with healthy lifestyle habits, you can take other steps to prevent and control painful sickle cell crises. A number of factors can cause sickle cell crises. Knowing how to avoid or control these factors can help you manage your pain.

You may want to avoid decongestants, such as pseudoephedrine. These medicines can tighten blood vessels and further prevent red blood cells from moving smoothly through the vessels.

Avoid extremes of heat and cold. Wear warm clothes outside in cold weather and inside of air-conditioned rooms. Don't swim in cold water or climb at high altitudes without extra oxygen.

Reduce the stress in your life. Talk to your doctor if you're depressed or having problems on the job or with your family. Support from family and friends as well as a support group can help you cope with daily life.

If possible, avoid jobs that require a lot of physical labor, expose you to extremes of heat and cold, or involve long work hours.

Also, don't travel in airplanes where the cabins aren't pressurized (that is, no extra oxygen is pumped into the cabin). If you must travel in such an airplane, talk to your doctor about how to protect yourself.

Get a flu shot and other vaccines to prevent infections. You also should see your dentist regularly to prevent infections and loss of teeth. Contact your doctor if you have any signs of an infection, such as a fever or trouble breathing. Getting treatment right away is important.

Regular medical checkups and treatment are also important. Checkups may include tests for possible kidney, lung, and liver diseases. See a sickle cell anemia expert regularly. Also, see an eye doctor regularly to check for damage to your eyes.

Learn the signs and symptoms of a stroke. They include a lasting headache, weakness on one side of the body, limping, and sudden changes in speech, vision, or hearing. If you have any of these symptoms, report them to your doctor promptly.

Get treatment and control any other medical conditions you have, such as diabetes.

Talk to your doctor if you're pregnant or planning to become pregnant. You will need special prenatal care. Sickle cell anemia can worsen during pregnancy.

Women who have sickle cell anemia also are at an increased risk for an early birth or a low-birth-weight baby. However, with early prenatal care and frequent checkups, you can have a healthy pregnancy.

Learn Ways To Cope With Pain

Pain is different for each person. Pain that one person can live with is too much for another person. Work with your doctor to find ways to manage your pain. You may need both over-the-counter and prescription medicines. Your doctor may prescribe narcotic pain medicines. If so, ask him or her how to safely use these medicines.

Other ways to manage pain include using a heating pad, taking a hot bath, resting, or getting a massage. Physical therapy might help ease your pain by helping you relax and strengthening your muscles and joints.

Counseling or self-hypnosis also may help. You may find that activities that keep your mind off the pain, such as watching TV and talking on the phone, are helpful.

Caring for a Child Who Has Sickle Cell Anemia

If your child has sickle cell anemia, you should learn as much about the disease as possible. This will help you recognize early signs of problems, such as fever or chest pain, and seek early treatment.

Sickle cell centers and clinics can give you information and counseling to help you handle the stress of coping with your child's disease.

Ongoing Care

Your child will need to see the doctor often for blood tests. The doctor also will check your child for any possible damage to his or her lungs, kidneys, and liver.

Talk to the doctor about your child's treatment plan, how often he or she needs checkups, and the best ways to help keep your child as healthy as possible.

Preventing Infections

To prevent infections, make sure your child gets all of the vaccines that his or her doctor recommends. (For more information on vaccines, see "How Is Sickle Cell Anemia Treated?")

Good hygiene also can help prevent infections. Make sure your child washes his or her hands often. This will help lower the chances of getting an infection.

Call the doctor right away if your child has any signs of infection, such as fever or trouble breathing. Keep a thermometer on hand and know how to use it. Call a doctor if your child has a temperature above 101 degrees Fahrenheit (38.5 degrees Celsius).

Preventing a Stroke

Know the signs and symptoms of a stroke so you can take action. Signs and symptoms include a lasting headache, weakness on one side of the body, limping, and sudden changes in speech, vision, or hearing. Changes in behavior also may be a sign of a stroke.

Talk with the doctor about whether your child needs regular ultrasound scans of the head. These scans can show whether your child is at high risk for a stroke.

Calling the Doctor

Ask your child's doctor about when you should call him or her right away. For example, he or she may want you to call right away if your child has any signs of a stroke or infection. You also may need to call if your child has:

• Swelling of the hands or feet.
• Swelling of the stomach. If the spleen gets larger than normal, you may see or feel swelling below the lower left rib. Your child may complain that the area feels tender.
• Pale skin or nail beds or a yellowish color on the skin or on the whites of the eyes.
• Sudden fatigue (tiredness) with no interest in his or her surroundings.
• An erection of the penis that won't go away.
• Pain in the joints, stomach, chest, or muscles.
• A fever.

School-aged children can often, but not always, take part in physical education or sports. However, your child's doctor should approve any activity. Ask the doctor about safe activities for your child.

Caring for a Teen Who Has Sickle Cell Anemia

Teens who have sickle cell anemia must manage their condition, while also dealing with the stresses of the teen years. These teens also face some specific stresses related to sickle cell anemia, including:

• Body-image problems caused by delayed sexual maturity.
• Coping with pain and fear of addiction from using narcotic pain medicines.
• Living with uncertainty. (Sickle cell anemia is unpredictable and can cause pain and damage to the body at any time.)

Teen support groups and family and individual counseling are ways to support teens who have sickle cell anemia.