Living with sickle cell anemia can be challenging, but people with the disease can live full lives. People who have sickle cell disease can live full lives and enjoy most of the activities that other people do. It is important to work with your healthcare team on a treatment plan and stick with it to manage the condition.
Despite their extensive healthcare needs, many people living with sickle cell disease have difficulty getting the care they need. They sometimes report feeling that providers don’t pay attention to their symptoms. Social factors, such as stigma, bias, and discrimination, may affect medical care and make people delay getting the care they need. Delayed care or lack of access to medicines can lead to more pain crises, more severe pain, more hospitalizations, and a greater need for potentially addictive opioid medicines for pain relief.
Vaccinations
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Children and adults with SCD should get all recommended vaccinations, including a flu vaccination because they are considered “high risk” for certain infections. Additionally, for children under 5 years of age, daily penicillin (or other antibiotic prescribed by a doctor) is recommended.
Find Good Medical Care
Sickle cell disease is a complex disease. Good quality medical care from doctors and nurses who know a lot about the disease can help prevent some serious problems. Often the best choice is a hematologist (a doctor who specializes in blood diseases) working with a team of specialists.
Keep an eye out for possible problems caused by SCD. If you have any of the following problems, get medical attention right away Fever of 101 F or higher, Chest Pain, Severe pain that you can’t soothe, Severe headache, dizziness or stiff neck, Seizure, Swelling in your belly, Loss of feeling or movement, For men, a painful erection that lasts more than 4 hours, Problems breathing, Sudden loss of vision.
Get Regular Checkups
Regular health checkups with a primary care doctor can help prevent some serious problems. Babies from birth to 1 year of age should see a doctor every 2 to 3 months. Children from 1 to 2 years of age should see a doctor at least every 3 months. Children and adults from 2 years of age or older should see a doctor at least once every year.
Prevent Infections
Common illnesses, like the flu, can quickly become dangerous for a child with sickle cell disease. Practicing hand washing and food safety among other best practices can help prevent infections.
Learn Healthy Habits
People with sickle cell disease should drink 8 to 10 glasses of water every day and eat healthy food. Try not to get too hot, too cold, or too tired. They can, and should, participate in physical activity to help stay healthy. However, it’s important that they don’t overdo it, rest when tired, and drink plenty of water.
Learning how to manage stress, relax, and cope with problems can improve your emotional and physical health. Stress is an important and common trigger for sickle cell disease complications. Not getting enough good quality sleep over time can lead to serious physical and mental health problems. The recommended amount of sleep for adults is 7 to 9 hours a day.
Get support
Find a patient support group or community-based organization that can provide information, assistance, and support.