Empower Yourself: Questions To Ask Your Doctor About Managing Sickle Cell Disease

woman talking to doctor

The latest news on sickle cell disease is encouraging. Bone marrow stem cell transplantation represents the strongest potential cure for sickle cell disease, but scientists are still working to refine this therapy so that it can ultimately be widely available. For now, it is still important for patients and their families to obtain as much medical knowledge as possible about this potentially debilitating genetic condition. Speak with your health care provider to come up with a plan for preventing or reducing the complications of sickle cell disease, such as severe pain, infections and stroke.

The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health, offers the following questions as examples of topics that patients might discuss in detail with their doctors:

How do I develop a health maintenance plan for my sickle cell disease? This plan should involve having the routine immunizations and screenings recommended by the Advisory Committee on Immunization Practices (ACIP) for all individuals, as well as the additional immunizations recommended for persons with sickle cell disease. It also should include preventive measures such as drinking plenty of fluids (specifically water), avoiding exposure to extreme weather conditions and getting adequate rest. Immunization recommendations as well as other treatment guidelines  can be found here. In addition, it is important to always take the medications as prescribed by your physician and to speak with your doctor first before changing any medication.

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What can I do to prevent infections? Talk to your doctor about the use of vaccines and penicillin to prevent infections, such as pneumonia and meningitis.