Talking to Your Healthcare Provider About Sickle Cell Disease
You have a unique medical history. Therefore, it is essential to talk with your doctor or healthcare provider about your personal risk factors and/or experience with sickle cell disease. By talking openly and regularly with your healthcare provider, 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 healthcare provider:
- Bring someone else with you. It helps to have another person hear what is said and think of questions to ask.
- Write out 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 Healthcare Provider
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 healthcare provider?
- 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 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?
References:
Cecil Textbook of Medicine. 22nd ed. W.B. Saunders Company; 2003.
National Heart, Lung, and Blood Institute website. Available at: http://www.nhlbi.nih.gov/.
Sickle Cell Disease Association of America website. Available at: http://www.sicklecelldisease.org/.
Last reviewed February 2007 by Mark A. Best, MD, MPH, MBA
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.