Sickle Cell Disease Living With Sickle Cell Disease
Follow these steps to help relieve symptoms and manage your condition at home. It is important to work with your healthcare team on a treatment plan and stick with it to manage the condition. People who have sickle cell disease can live full lives and enjoy most of the activities that other people do.
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Receive routine follow-up care
- See your healthcare provider regularly. Most people who have sickle cell disease should see their provider every 3 to 12 months, depending on their age and the type of sickle cell disease they have.
- Get regular vaccines, including an influenza (flu) shot every year, and the COVID-19 vaccine as recommended. Routine vaccines, such as those for pneumonia and meningococcal disease, can also help protect against the higher risks for infections in people with sickle cell disease. Follow these guidelines even if you or your child is taking penicillin.
- Take hydroxyurea and other medicines recommended by your healthcare provider on a regular basis as prescribed. Although pregnant women should not take hydroxyurea, follow the ongoing medication advice from your healthcare provider to improve your quality of life.
- Ask your healthcare team to check your blood pressure at each visit and ask what your numbers mean for you. Learn how to manage your blood pressure if it is’s consistently higher than 130/80 mm Hg.
Learn what to do in a pain crisis
Set up a pain action plan with your healthcare provider ahead of time so you’re prepared when a pain crisis hits.
- When an acute crisis is just starting, drink lots of fluids and take a nonsteroidal anti-inflammatory drug, such as ibuprofen. If you have kidney problems, acetaminophen is often preferred. Also apply heat to the painful area with a heating pad or compress.
- If you cannot manage the pain at home, go to a sickle cell disease day hospital or clinic or to an emergency department to receive additional, stronger medicines. You may need to be admitted to the hospital to fully manage a pain crisis. You may be able to return home once your pain is under better control.
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.
Adopt a healthy lifestyle
Prevent problems over your or your child’s lifetime
- Avoid situations that may set off a crisis. Extreme heat or cold, as well as sudden changes in temperature, are often triggers. When going swimming, ease into the water rather than jumping right in. Both adults and children should also avoid dehydration and vitamin deficiencies.
- Do not travel in an aircraft cabin that is unpressurized.
- If you experience priapism (a prolonged, painful erection), you may be able to relieve your symptoms by doing light exercise, urinating, drinking more fluids, and taking medicine recommended by your healthcare provider. If an erection lasts more than 4 hours, seek immediate care.
- If your child attends day care, preschool, or school, talk with their teacher about the disease. Teachers need to know what to watch for and how to accommodate your child.
- Learn how to feel your child's spleen. Because of the risk of splenic sequestration crisis, caretakers should learn how to palpate a child's spleen. They should try to feel for the spleen daily and more often when the child is ill. If the spleen feels larger than usual, call the healthcare provider.
- Take care of your mental health. Talk to your family and friends about how you are feeling. Talk to your provider if you have feelings of depression or anxiety. Supportive counseling and, sometimes, medicines may help.
Healthy Living with Sickle Cell Disease Fact Sheet
Get more tips for healthy living with sickle cell disease.