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Talking to Your Doctor About Sickle Cell Disease

You have your own health history. Talk with your doctor about your risk factors and background with sickle cell disease. By talking openly and often with your doctor, you can take an active role in your care.

General Tips for Gathering Information

Here are some tips that will make it easier for you to talk to your doctor:

  • Bring someone else with you. It helps to have another person hear what is said and think of questions to ask.
  • Write down your questions so do you do not forget them.
  • Write down the answers you get. Make sure you understand what you are hearing.
  • Ask for help if you need it. Do not be afraid to ask questions or ask where you can find more information. You have a right to know.

Specific Questions to Ask Your Doctor

About the Risk of Developing Sickle Cell Disease

  • Am I a carrier for sickle cell disease?
  • Do I have it?
  • What are the chances that my children will have it?

About Sickle Cell Disease

  • What can I expect from this disease?
  • What should I do to avoid infections?
  • Should be immunized? What vaccines should I get?
  • How will I know if I have an infection?
  • When should I call my doctor?
  • What should I do if I have to travel by plane?

About Treatment Options

  • What treatments will help me avoid sickle cell crises?
  • What treatments will help me avoid other problems?
  • How often should I see my doctor?
  • Should I be getting ultrasound screenings?
  • Will I need blood transfusions?
  • Am I going to get a bone marrow transplant?
  • Do you advise a bone marrow transplant?

About Lifestyle Changes

  • How can I reduce my risk of complications?
  • What can I do to avoid sickle cell crises?
  • What exercise is safe for me to do?
  • How can I learn how to eat well? Can I speak to a dietitian?
  • How much sleep should I get each night?

About Your Outlook

  • Do you know of any clinical trials I could be in?
  • Might I be able to get a bone marrow transplant in the future?
REFERENCES:

Pinto VM, Balocco M, et al. Sickle cell disease: a review for the internist. Intern Emerg Med. 2019;14(7):1051-1064.

Sickle cell disease in adults and adolescents. EBSCO DynaMed website. Available at: https://www.dynamed.com/condition/sickle-cell-disease-in-adults-and-adolescents . Accessed March 4, 2021.

Sickle cell disease in infants and children. EBSCO DynaMed website. Available at: https://www.dynamed.com/condition/sickle-cell-disease-in-infants-and-children. Accessed March 4, 2021.

Tips for talking to your doctor. American Academy of Family Physicians Family Doctor website. Available at: http://familydoctor.org/familydoctor/en/healthcare-management/working-with-your-doctor/tips-for-talking-to-your-doctor.html. Accessed January 29, 2021.

Last reviewed March 2020 by EBSCO Medical Review Board Marcin Chwistek, MD  Last Updated: 3/4/2021