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Talking to Your Doctor About Sickle Cell Disease

You have a unique medical history. It is essential to talk with your doctor about your personal risk factors and/or experience with sickle cell disease. By talking openly and regularly 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 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

About the Risk of Developing Sickle Cell Disease

  • 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?

About 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?

About Treatment Options

  • 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?

About Lifestyle Changes

  • 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?

About Your Outlook

  • 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?
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References:

Sickle cell disease in adults and adolescents. EBSCO DynaMed Plus website. Available at: http://www.dynamed.... Updated October 4, 2016. Accessed October 5, 2016.
Sickle cell disease in infants and children. EBSCO DynaMed Plus website. Available at: http://www.dynamed.... Updated September 20, 2016. Accessed October 5, 2016.
Tips for talking to your doctor. American Academy of Family Physicians Family Doctor website. Available at:
...(Click grey area to select URL)
Updated May 2014. Accessed December 13, 2016.
Last reviewed December 2016 by Marcin Chwistek, MD
Last Updated: 5/20/2015

 

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