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 diet. A healthy diet includes a variety of vegetables and fruits. It also includes whole grains, fat-free or low-fat dairy products, and protein foods, such as lean meats, eggs, poultry without skin, seafood, nuts, seeds, beans, and peas.

A healthy diet is low in sodium (salt), added sugars, solid fats, and refined grains. Solid fats are saturated fat and trans fatty acids. Refined grains come from processing whole grains, which results in a loss of nutrients (such as dietary fiber). Examples of refined grains include white rice and white bread.

For more information about following a healthy diet, go to the National Heart, Lung, and Blood Institute’s “Your Guide to Lowering Your Blood Pressure With DASH” and the U.S. Department of Agriculture’s ChooseMyPlate.gov Web site. Both resources provide general information about healthy eating.

Your doctor may suggest that you take folic acid (a vitamin) every day to help your body make new red blood cells. He or she also may recommend that you 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 activity 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 safe 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.

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

If you have trouble quitting smoking on your own, consider joining a support group. Many hospitals, workplaces, and community groups offer classes to help people quit smoking. Ask your family members and friends to support you in your efforts to quit.

For more information about how to quit smoking, go to the Health Topics Smoking and Your Heart article and the National Heart, Lung, and Blood Institute's "Your Guide to a Healthy Heart." Although these resources focus on heart health, they include general information about how to quit smoking.

Take Steps To Prevent and Control Complications

Along with adopting healthy lifestyle habits, you can take other steps to prevent and control painful sickle cell crises. Many 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, making it harder for red blood cells to move 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. Also, be cautious at high altitudes; you may need extra oxygen.

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

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

Ongoing Care

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 right away if you have any signs of an infection, such as a fever or trouble breathing.

For people who have sickle cell anemia, just like for everyone else, regular medical care and treatment for health issues are important. Your checkups may include extra 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:

• Sudden weakness
• Paralysis (an inability to move) or numbness of the face, arms, or legs, especially on one side of the body
• Confusion
• Trouble speaking or understanding speech
• Trouble seeing in one or both eyes
• Problems breathing
• Dizziness, trouble walking, loss of balance or coordination, and unexplained falls
• Loss of consciousness
• Sudden and severe headache

If you think you’re having a stroke, call 9–1–1 right away. Do not drive to the hospital or let someone else drive you. Call an ambulance so that medical personnel can begin life-saving treatment on the way to the emergency room.

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

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

Women who have sickle cell anemia also are at 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.

Emotional Issues and Support

Living with sickle cell anemia may cause fear, anxiety, depression, and stress. Talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're very depressed, your doctor may recommend medicines or other treatments that can improve your quality of life.

Joining a patient support group may help you adjust to living with sickle cell anemia. You can see how other people who have the same symptoms have coped with them. Talk with your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

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 strong pain medicines. If so, talk with him or her about 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, 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 a 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 with 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, go to "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 (about 38.5 degrees Celsius).

Preventing a Stroke

Know the signs and symptoms of a stroke so you can take action. (See above for a list of stroke signs and symptoms.) Changes in behavior also might be a sign of a stroke.

Talk with the doctor about whether your child needs regular ultrasound scans of the head (transcranial Doppler (TCD) ultrasound). 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 ribs on the left side of the body. Your child may complain that the area feels tender.
• Pale skin or nail beds or a yellowish color of the skin or 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 strong 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.

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