Sickle Cell Disease Living With Sickle Cell Disease
Follow these steps to help relieve symptoms and help you manage your condition at home.
Read inspiring stories of people who have sickle cell disease, such as Natalie Jean-Baptiste, who is also a COVID-19 survivor.
Today’s Faces of Sickle Cell Disease
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 type of sickle cell.
- Get regular vaccines, including a flu shot every year, and the COVID-19 vaccine. There are also routine immunizations to cover the higher risks of sickle cell disease, such as pneumonia and meningococcal vaccines. Follow these guidelines even if you or your child is still taking penicillin.
- Take hydroxyurea and other medicines recommended by your healthcare provider on a regular basis as prescribed. Although pregnant individuals should not take hydroxyurea, follow the ongoing medication advice from your healthcare provider for improved quality of life.
- Ask your healthcare team to check your blood pressure at each visit, and ask what your numbers mean for you – and how to control your blood pressure if it’s consistently higher than 130/80 mm Hg.
Learn what to do in a pain crisis
- Establish a pain action plan with your healthcare provider ahead of time.
- When an acute crisis is just starting, drink lots of fluids and take a nonsteroidal anti-inflammatory drug (NSAID), such as ibuprofen. If you have kidney problems, acetaminophen is often preferred. Also apply heat to the area with a heating pad or compress.
- If you cannot manage the pain at home, go to a sickle cell disease day hospital or outpatient unit or an emergency room to receive additional, stronger medicines, and IV fluids. You may need to be admitted to the hospital to fully control an acute pain crisis. You may be able to return home once your pain is under better control.
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, emptying your bladder by urinating, drinking more fluids, and taking medicine recommended by your healthcare provider.
- If your child attends day care, preschool, or school, speak to their teacher about the disease. Teachers need to know what to watch for and how to accommodate your child.
- Learn how to palpate (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, they should call the care 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, antidepressant medicines may help.
