Many people with sickle cell disease are capable of leading fulfilling lives with the help of community support systems and adequate health care. Additionally, they are more likely than ever to be in generally good health and live longer than in the past. Sickle Cell patients today frequently survive into their forties, fifties, or longer.
Implement or maintain a healthy lifestyle
You should adopt or maintain healthy living practises to take care of your health. Adhere to a healthy eating schedule. To assist your body in producing new red blood cells, your doctor may advise you to take folic acid daily. Additionally, especially during warm weather, you should consume at least 8 glasses of water daily. This can help to prevent dehydration, which occurs when your body doesn’t have enough fluids.
To maintain health, your body needs frequent physical activity. Exercise that leaves you feeling really exhausted should be avoided. Drink a lot of fluids while exercising. You should discuss how much and what types of physical activity are good for you with your doctor.
Additionally, you should get enough sleep and rest. If you suspect you may have a sleep disorder like snoring or sleep apnea, tell your consultant. A symptom of sleep apnea is one or more breathing pauses or shallow breaths while you sleep.
Ask your consultant if you can consume alcohol and how much is safe for you. Stop smoking if you do. Ask your consultant about products and programmes that can assist you in quitting smoking.
Explore ways to manage with pain
Sickle Cell disease symptoms can be mild or severe and vary. Each person perceives pain in a unique way. Pain that is manageable for one individual may be too difficult for another. To identify solutions to control your pain, consult with your doctor or specialised consultant. Start a diary to begin identifying the triggers that cause your pain.
A heating pad, a hot bath, rest, or a massage are additional methods for treating pain. Physical therapy may reduce your discomfort by promoting relaxation and enhancing the strength of your muscles and joints. Cognitive behaviour therapy, counselling, or self-hypnosis may potentially be beneficial in addition to using a tens machine.
You might discover that engaging in activities and hobbies like TV watching, phone calls, and prayer are beneficial help to take your mind off your pain.
Take steps to prevent and control complications
You can take additional measures to prevent and manage painful sickle cell crises in addition to adopting healthy lifestyle choices. Sickle Cell crises may result from a variety of circumstances. You can better control your pain if you know how to prevent or reduce the variables. Decongestants like pseudoephedrine may be best avoided. These drugs have the potential to constrict blood arteries, further obstructing red blood cells’ ability to pass through the vessels without sticking.
Avoid temperature extremes. When it’s cold outside or in a room with air conditioning, dress warmly. Avoid climbing at high altitudes or swimming in cold water without additional oxygen. Everyday stresses should be reduced. If you are depressed or having problems at work or with your family, talk to your consultant. You can manage daily life better if you have support from family, friends, and a support group.
Avoid working in occupations that demand a lot of physical labour, put you in extreme temperatures, or have long work hours. Furthermore, avoid flying on aircraft without pressurised cabins (air pumped full of extra oxygen). Consult your doctor for advice on how to be safe if you must fly in one of these aircraft.
To avoid diseases, get immunisations such as the flu jab. In addition, you should visit your dentist frequently to avoid infections and tooth loss. If you experience any infection-related symptoms, such as a fever or difficulty breathing, call your doctor immediately. It is critical to seek therapy straight away.
Caring for Children with Sickle Cell Anaemia
If your child or adolescent has sickle cell disease, you can take steps to educate yourself about the condition and help your child in managing it on an everyday basis. It is vital to keep in mind that you cannot be with them constantly; they will need to learn how to handle themselves with help and instruction. The earlier they learn how to do this, the better.
Teenagers with sickle cell disease must manage the condition in addition to the pressures of adolescence. Along with general stressors connected to Sickle Cell disease, these teenagers also experience:
- Issues with body image brought on by postponed sexual development.
- Managing pain and avoiding addiction when using addictive painkillers.
- Managing uncertainty. (Sickle Cell disease is unpredictable and may result in pain or physical harm at any time.)
There are ways to support teenagers with Sickle Cell disease, including teen support groups, family counselling, and individual counselling. Getting started with an expert patient programme may also help with morale-boosting and coping skills.
You should educate yourself as much as you can on Sickle Cell anaemia if your child has it. This will enable you to identify warning indications of issues, including a fever or chest trouble, and get care as soon as possible.
Sickle Cell centres and clinics can provide you with information and therapy to help you deal with the stress of managing your child’s disease.
If your child has Sickle Cell Disease, you should educate yourself as much as you can on the condition. This will enable you to spot warning indications of issues, including a fever or chest trouble, and get care as soon as possible.
To help you manage the stress of dealing with your child’s condition, sickle cell centres and clinics can provide you with information and therapy.
Make sure your child has all of the immunisations that their doctor advises in order to prevent infections. (Consult your consultant or GP for further information about vaccinations).
Additionally, good hygiene can help in preventing infections. Make sure your child frequently washes their hands. The likelihood of contracting an infection will be reduced as a result.
If your child exhibits any symptoms of illness, such as fever or breathing difficulties, call the doctor straight away. Know how to use a thermometer and keep one on hand. If your child’s temperature exceeds 101 degrees Fahrenheit (38.5 degrees Celsius), call a doctor.
Preventing a Stroke
To be able to act quickly, familiarise yourself with the potential symptoms and indicators of a stroke. Long-lasting headaches, weakness on one side of the body, limping, and abrupt changes in speech, vision, or hearing are among the signs and symptoms. A stroke may also manifest as behavioural changes.
Find out from your consultant if your child requires routine head ultrasounds. Using these scans, you can determine if your child has a high risk of having 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
If your child exhibits any symptoms of a stroke or infection, call straight away. Calling may also be necessary if your child has:
- Stomach bloating or swelling. You may notice or feel swelling below the lower left rib if the spleen becomes larger than usual. Your child could complain that the area hurts.
- Pale skin, nail beds, a yellow hue on the skin or the whites of the eyes.
- Sudden fatigue with a lack of interest in the child’s surroundings.
- A persistent erection of the penis.
- Aches and pains in the muscles, chest, stomach, or joints.
An increase in hand or foot swelling.
School-aged children can frequently participate in physical education or sports, although not always. Any activity, though, needs to be approved by your child’s doctor. Consult your doctor about the safest activities for your child. It is essential that you inform your child’s nursery or school of their condition and provide them with information.
The offer of a screening test for the blood condition will be extended to all pregnant women in England who are believed to be at risk of having a child with sickle cell disease. In addition, all expectant women are screened for thalassaemia.
According to Allison Streetly, Director of the NHS Sickle Cell and Thalassaemia Screening Programme, the introduction of a countrywide antenatal screening test for the hemoglobinopathies should put a stop to unexpected diagnosis among infants presenting with acute overwhelming infections and splenic crises. In the end, she argued, each child born with a blood condition should be expected and the consequence of a deliberate decision. “And care that is appropriate and comprehensive should be available from birth.”
Alongside the National scheme for newborn baby screening for Sickle Cell disease, there is a prenatal screening scheme for hemoglobinopathies.