Pain Management

Good health care and good self management in the community, 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.

Implement or maintain a healthy lifestyle

To take care of your health, you should implement 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 consultant 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 Consultant about whether you can drink alcohol and what amount is safe for you. If you smoke, quit. Talk to your consultant about programs and products that can help you quit smoking.

Symptoms of Sickle Cell disease vary and range from mild to severe Pain is experienced differently by each person. Pain that is bearable by one person can easily be too challenging for another person. Work with your specialist consultant/ doctor to find ways to manage your pain. Make a dairy to start to identify pain triggers.

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. Using a tens machine cognitive behaviour therapy

Counselling 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, praying is helpful.

Explore ways to manage with pain

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 consultant if you’re depressed or encountering difficulties 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.

It is crucial to avoid jobs that require a lot of physical labour, expose you to extremes of heat and cold, or involve long work hours. Also, don’t travel in airplanes where the cabins aren’t pressurised (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 flu jabs 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.

Caring for Children with Sickle Cell Anaemia

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If you have a child or teenager that has Sickle Cell anaemia, you can take steps to learn about the disease and help your child manage it on a day-to-day basis. It is important to remember not to be over bearing throughout life you cannot be with them all of the time they are going to have to learn how to self manage with guidance and support the earlier the better.

Teenagers who have Sickle Cell anaemia 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 anaemia, including:

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

Teen support groups and family and individual counselling are ways to support teens that have Sickle Cell anaemia. Embarking on an Expert Patient Programme may also be conducive in boosting moral and addressing with coping mechanisms.

Caring needs

If your child has Sickle Cell anaemia, you should learn as much about the disease as possible. This will help you recognise 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 condition.

Ongoing Care

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

Talk to the consultant 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. Be cautious but not overly protective a strong mind set helps along life journey with this condition.

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 your Consultant or GP.

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

Familiarise yourself with the possible signs and symptoms of a stroke so you can take early 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.

Talk with the consultant 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

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 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 colour 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.
  • Swelling of the hands or feet.

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. It is imperative that you advise your child’s school or nursery of the child’s condition supply them with information.

Screening

It is now confirmed that all pregnant women in England thought to be at risk of having a child with Sickle Cell disease will be offered a screening test for the blood disorder. This is in addition to universal screening of pregnant women for thalassaemia.

The introduction of a national antenatal screening test for the haemoglobinopathies should mean an end to surprise diagnoses among infants presenting with severe overwhelming infections and splenic crises, said Allison Streetly, Director of the NHS Sickle Cell and Thalassaemia Screening Programme. “Ultimately, every baby born with one of the blood disorders should be expected and be the result of an informed choice,” she said. “And appropriate and comprehensive care should be available from birth.”

The antenatal screening programme for the haemoglobinopathies runs alongside the National Programme for screening newborn babies for Sickle Cell disease.