Living With Sickle Cell Anemia

With good health care, many people with sickle cell anemia can live productive lives, 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 good care of yourself, do what you can to prevent sickle cell crises, and get regular medical care. Find out all you can about your condition and learn what signs to watch out for.

To take care of your health, you should maintain healthy lifestyle habits. These include:

• Eating healthy. Your doctor also may recommend a vitamin (folic acid) to take every day to help your body make new red blood cells.
• Drinking at least 8 glasses of water every day, especially in warm weather.
• Exercising regularly, but not to the point that you become very tired. Drink lots of fluids when you exercise. Talk with your doctor about how much exercise is right for you.
• Getting enough sleep and rest. Tell your doctor if you think you may have a sleep problem such as snoring or sleep apnea (a condition in which you stop breathing for short periods during sleep).
• Limiting the amount of alcohol you drink.
• Quitting smoking.

Along with healthy lifestyle habits, there are some things you can do to help prevent a sickle cell crisis:

• Contact your doctor if you have any signs of an infection, such as a fever or trouble breathing. Get treated right away. You may want to avoid decongestants, such as pseudoephedrine, that can constrict blood 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, don’t seek jobs that will require strenuous physical labor, expose you to extremes of heat and cold, or involve long work hours.
• Don’t travel in airplanes where the cabin isn’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.

Regular medical checkups and treatment are important.

• Checkups may include tests for possible kidney, lung, and liver diseases as well as any side effects from medicines you take. See a sickle cell anemia expert regularly.
• Learn the symptoms of a stroke and report them to your doctor promptly. Symptoms of stroke can include a lasting headache, weakness on one side of the body, limping, or a sudden change in speech, vision, or hearing. A change in behavior also can be a symptom of a stroke.
• Get a flu shot and other vaccinations to prevent infections.
• See your dentist regularly to prevent infections and loss of teeth.
• See an eye doctor regularly to check for damage to your eyes.
• Get treatment and control any other medical conditions you might have, such as diabetes.
• Talk with your doctor if you’re pregnant or planning to become pregnant. You will need special prenatal care. Sickle cell anemia can become more severe during pregnancy, with more painful crises. Women with sickle cell anemia also are at an increased risk for an early birth or a low-birth-weight baby. You can have a healthy pregnancy with early prenatal care and frequent checkups.

Coping 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 make a pain management plan that works well for you. It may include both over-the-counter and prescription medicines. Talk with your doctor about how to safely use narcotic pain medicines.

Other ways to manage pain include using a heating pad, taking a hot bath, resting, or getting a massage. Physical therapy might help to relieve your pain if it can help you relax and strengthen your muscles and joints. Counseling and self-hypnosis may help. Also helpful are activities that keep your mind off the pain, such as watching TV and talking on the phone.

Caring for a Child With Sickle Cell Anemia

If your child has sickle cell anemia, you should learn as much about the condition 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 stresses of coping with this serious, chronic condition.

Frequent Doctor Visits

Your child will need to see the doctor often for blood tests and to be checked for any possible damage to his or her lungs, kidney, and liver. It’s recommended that before age 2, children with sickle cell anemia see the doctor every 2 or 3 months. After age 2, children may need to see the doctor at least every 6 months.

Talk to your child’s doctor about your child’s treatment, how often the doctor should see the child, and the best ways to help keep your child as healthy as possible.

Preventing Infection

Call your child’s doctor if your child has a fever or if you notice any signs of infection, such as 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). To prevent infection, most children will be given:

• Daily penicillin up to age 5.
• A flu shot every year after 6 months of age.
• A regular vaccination against pneumonia. (This also is given to children who don’t have sickle cell anemia.) Children with sickle cell anemia also get two doses of a stronger pneumonia vaccination after 2 years of age. Doses of this stronger vaccination are given several years apart.
• Vaccination against meningitis after the age of 2.

Preventing a Stroke

Ask your doctor whether your child needs regular ultrasound scans of the head. Knowing the signs and symptoms of a possible stroke is important. These include a lasting headache, weakness on one side of the body, limping, or a sudden change in speech, vision, or hearing. It could even include changes in behavior.

Find Out When To Call the Doctor

Ask your child’s doctor what you should report to him or her right away. For example, you may be asked to call the doctor right away if your child has any signs of a stroke or infection. You may be told to call the doctor if your child has:

• Swelling of the hands, feet, or stomach
• Skin or nail beds that are suddenly pale or skin or eyes that have a yellow color
• Sudden fatigue (tiredness) with no interest in his or her surroundings
• Erection of the penis that won’t go away
• Pain in the joints, stomach, chest, or muscles

School-aged children can often—but not always—take part in physical education or sports, but only after approval of the child’s doctor. Ask your doctor about safe levels of exercise for your child.

Caring for a Teen With Sickle Cell Anemia

Just as with any chronic condition, teens who have sickle cell anemia must manage their condition while dealing with the stresses of the teen years—peer pressure, sexuality, independence, education, and career goals. Specific stresses faced by teens with sickle cell anemia include:

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

Ways to support teens with sickle cell anemia include teen support groups and family and individual counseling.