Join a Clinical Trial
Have you been diagnosed with Sickle Cell Disease? Consider joining a clinical trial to help find better care and health outcomes for people with SCD.
Get Prepared for Your Health Visits
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 health care providers:
- How do I develop a health maintenance plan for my Sickle Cell Disease? Work with your health care provider and make sure your plan includes routine immunizations and screenings. Ask about other practices suggested for persons with SCD. Recommendations and treatment guidelines can be found at http://1.usa.gov/1IhXvid.
Remember preventive measures such as drinking plenty of water, avoiding exposure to extreme weather conditions, and getting adequate rest.
- What can I do to prevent infections? Talk to your health care provider about the use of vaccines and penicillin to prevent infections, such as pneumonia and meningitis.
- How do I know if treatments like hydroxyurea [hi-droxee-you-REE-ah] are right for me? Hydroxyurea is an oral medication that can help reduce the frequency of pain episodes, or “crises,” and acute chest syndrome (a condition in which lung tissue is damaged) in many individuals. Your health care provider can share additional information on hydroxyurea and together, you can decide if hydroxyurea could be a fit for your wellbeing.
- Should blood transfusions be a part of my care? Blood transfusions can be an effective therapy for individuals with sickle cell disease, particularly those at risk for stroke. Patients receiving frequent transfusions should be monitored closely for side effects like iron buildup. Your health care provider can help you decide when this option is right for you.
As a person living with SCD, remember, you and your health care provider are a team in ensuring that you live a healthy live with the best possible health outcomes possible. Additional resources to help prepare for your visit may be found at the links below.
Resources
National Institute of Health’s Heart, Lung and Blood Institute (NHLBI)