Questions to ask: Sickle cell disease

Diagnosis

• What type of sickle cell disease do I have, and what does it mean for me?
• What are my usual hemoglobin and reticulocyte numbers?
• Should I see a sickle cell specialist or go to a comprehensive sickle cell center?
• Which screening tests do I need, and how often (eye, kidney, brain, heart)?
• Which vaccines do I or my child need?
• Should my partner or other family members be tested for sickle cell trait?
• What should our family know about caring for a child with sickle cell disease?
• Is there a clinical trial that fits me or my child?

Before

• Should I start hydroxyurea? What are the benefits and risks for me?
• How often will I need blood tests on hydroxyurea?
• Do I need regular transfusions? Why or why not?
• Am I a candidate for gene therapy or a stem cell transplant?
• Do I have a brother or sister who could be tested as a donor?
• How would treatment affect my fertility, and should I save eggs or sperm first?
• What is my written plan for pain crises at home and in the emergency room?
• Will insurance cover these treatments, and who can help with costs and travel?
• How can my caregiver help, and what should they watch for?

During

• Is hydroxyurea working? Are my fetal hemoglobin and MCV going up?
• Is my dose as high as it safely can be?
• I am still having pain crises. Should we change or add treatment?
• Do I have too much iron from transfusions? Do I need chelation?
• What can I do to prevent acute chest syndrome when I am in the hospital?
• Which pain medicines should I use for chronic pain, and how can I lower side effects?
• Is it safe for me to travel by plane or to high altitude?
• What birth control is safe for me?
• Who do I call after hours, and which emergency room knows sickle cell disease best?

After

• After gene therapy or transplant, how long will I need follow-up?
• Which long-term checks do I need for my kidneys, eyes, heart, lungs, and hips?
• How do I move from pediatric to adult sickle cell care?
• What should I do if I want to become pregnant?
• Are there support groups or counseling for me and my family?
• What school or work accommodations can I ask for?
• What should I tell new doctors and hospitals about my sickle cell disease?

Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.