Living With Sickle Cell Anaemia
With good health care, many people who have sickle cell anaemia 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 anaemia now live into their forties or fifties, or longer.
If you have sickle cell anaemia, 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 that has sickle cell anaemia, 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 fruits, vegetables, and whole grains. It also includes lean meats, poultry, fish, beans, and fat-free or low-fat milk or milk products. A healthy diet is low in saturated fat, trans fat, cholesterol, sodium (salt), and added sugar.
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.
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. Many factors can cause sickle cell crises. Knowing how to avoid or control these factors can help you manage your pain.
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 labour, 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 vaccine 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 anaemia, 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 anaemia 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, contact your doctor immediately.
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 anaemia can worsen during pregnancy. You'll need special prenatal care.
Women who have sickle cell anaemia 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 anaemia may cause fear, anxiety, depression, and stress. It's important to talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're feeling 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 anaemia. You can see how other people who have the same symptoms have coped with them.
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.
Counselling 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 Anaemia
If your child has sickle cell anaemia, 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 centres and clinics can give you information and counselling 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 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. 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.
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 behaviour also may be a sign of a stroke.
Dr. Olukayode Williams
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