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Talking to Your Doctor About Sickle Cell Disease
General Tips for Gathering Information
- Bring someone else with you. It helps to have another person hear what is said and think of questions to ask.
- Write your questions ahead of time, so you don't forget them.
- Write down the answers you get, and make sure you understand what you are hearing. Ask for clarification, if necessary.
- Don't be afraid to ask your questions or ask where you can find more information about what you are discussing. You have a right to know.
Specific Questions to Ask Your Doctor
- Am I a carrier for sickle cell disease?
- Do I have sickle cell disease?
- What are the chances that my children will have sickle cell disease?
- What is the usual progression of the disease?
- What should I do to avoid infections?
- How will I know if I’ve developed an infection?
- What symptoms should alert me to see my doctor?
- What should I do if I have to travel by plane?
- What treatments will help me avoid sickle cell crises?
- What treatments will help me avoid other complications from sickle cell disease?
- Should I be getting periodic doppler ultrasound screening to prevent stroke?
- Will I need blood transfusions?
- Am I a candidate for a bone marrow transplant?
- Do you recommend a bone marrow transplant?
- What can I do to reduce the chances of complications from sickle cell disease?
- What can I do to avoid sickle cell crises?
- What exercise can I do that won’t put me at greater risk for sickle cell crises?
- Can you refer me to a dietitian so I can learn how to eat nutritiously?
- How much sleep should I get each night?
- Are there any clinical trials that I could participate in? Do you recommend any?
- Might I be a candidate for a bone marrow transplant in the future?
Owusu-Ofori S, Riddington C. Splenectomy versus conservative management for acute sequestration crises in people with sickle cell disease. Cochrane Database Syst Rev. 2002;(4):CD003425.
Sickle cell disease. EBSCO DynaMed website. Available at: http://www.ebscohost.com/dynamed. Updated June 6, 2013. Accessed July 1, 2013.
Sickle cell disease. Nemours' KidsHealth.org website. Available at: http://kidshealth.org/parent/medical/heart/sickle%5Fcell%5Fanemia.html. Updated September 2012. Accessed July 1, 2013.
Sickle cell disease (SCD). Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/ncbddd/sicklecell/index.html. Updated September 27, 2012. Accessed July 1, 2013.
What is sickle cell anemia? National Heart, Lung, and Blood Institute website. Available at: http://www.nhlbi.nih.gov/health/health-topics/topics/sca/. Updated September 28, 2012. Accessed July 1, 2013.
- Reviewer: Michael J. Fucci, MD
- Review Date: 05/2014
- Update Date: 05/07/2014