Sickle cell anemia is usually diagnosed through genetic screening done when a baby is born. Those test results will likely be given to your family doctor or pediatrician. Once sickle cell anemia is diagnosed, you'll likely be referred to a doctor who specializes in blood disorders (hematologist) or a pediatric hematologist.
Because appointments can be brief, and there's often a lot of ground to cover, it's a good idea to be well-prepared. Here's some information to help you get ready, and what to expect from your doctor.
What you can do
- Write down any symptoms you've noticed, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Bring a family member or friend along. Sometimes it can be difficult to remember all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions can help you make the most of your time together. For sickle cell anemia, some basic questions to ask your doctor include:
- What's the most likely cause of my child's symptoms?
- Are there other possible causes?
- What kinds of tests are needed?
- What treatments are available and which do you recommend?
- What types of side effects are common with these treatments?
- Are there any alternatives to the primary approach that you're suggesting?
- What's my child's prognosis?
- Are there any dietary or activity restrictions?
- Are there any brochures or other printed material that I can take with me? What websites do you recommend?
In addition to the questions that you've prepared, don't hesitate to ask additional questions during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over points you want to spend more time on. Your doctor may ask:
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- When did you first notice these symptoms?
- Have they been continuous or occasional?
- Does anything seem to improve these symptoms?
- What, if anything, appears to worsen the symptoms?
- Does anyone in your family have sickle cell anemia?
- Have you ever been told you have a trait for sickle cell anemia?
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- Sickle cell anemia. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/sca/. Accessed Nov. 6, 2013.
- Vichinsky EP. Overview of the clinical manifestations of sickle cell disease. http://www.uptodate.com/home. Accessed Nov. 6, 2013.
- Vichinsky EP, et al. Diagnosis of sickle cell disorders. http://www.uptodate.com/home. Accessed Nov. 6, 2013.
- Steinberg MH. In the clinic. Sickle cell disease. Annals of Internal Medicine. 2011;155:ITC3-1.
- Olowoyeye A, et al. Gene therapy for sickle cell disease. Cochrane Database Systematic Reviews. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD007652.pub3/abstract. Accessed Nov. 6, 2013.
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- Sun K, et al. New insights into sickle cell disease: A disease of hypoxia. Current Opinion in Hematology. 2013;20:215.
- Gladwin MT, et al. Nitric oxide for inhalation in the acute treatment of sickle cell pain crisis: A randomized controlled trial. JAMA. 2011;305:893.
- Adam SS, et al. Potential role for statins in sickle cell disease. Pediatric Blood Cancer. 2013;60:550.
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