Monitoring Sickle Cell

Sickle cell can be a complex disease to manage. Monitoring symptoms and addressing chronic complications before they progress may help to improve outcomes and life expectancy for people with sickle cell.

Managing Your Sickle Cell

Becoming and staying active in monitoring and managing your health is important because no one knows your body better than you do. Remember that this is not a substitute for professional medical advice, diagnosis or treatment. It’s important to talk with your healthcare team about any symptoms or concerns you have. Some of the things you can do include:

    • Develop a Nutrition Plan
      Sickle cell anemia is associated with low calcium intake, vitamin D deficiency, and nutrient deficiency. Staying hydrated and eating a good diet is important as ever for staying healthy with sickle cell. Working with a nutritionist can help you develop a plan that works for your body.
    • Reduce Stress
      Life with sickle cell can be challenging. It’s important to take time for yourself and focus on your own needs and emotions. Allowing yourself, even just a few minutes a day, can help you reduce stress. Reaching out for support from family members, friends, as well as getting help with day-to-day tasks can help. Mindfulness-based interventions such as yoga, meditation, and breathing exercises may help you reduce stress and anxiety, improve mood, and cope with pain.
    • Visit your doctor on a regular basis
      Find a doctor you trust and who is knowledgeable about sickle cell, so you feel comfortable getting checkups. Routine check-ups are important: Regular testing of blood and urine samples can determine if your hemoglobin levels are normal, check for infections, and monitor your organs for damage. Your doctor may recommend other medical tests, such as brain imaging screenings and x-rays to check for blood clots in the brain, lung infection, and bone damage.
    • Talk with your care team about next steps or follow-up appointments
      Be sure to talk to your doctor about treatment options, and let them know about any symptoms or pain crises. Open communication can help you and your healthcare team develop a care plan to prevent complications.
    • Write down and keep your appointments
      Keeping track of your appointments and conversations with your care team can help you advocate for better support and management of symptoms.
    • Maintain a list of your medications, vaccinations, and trips to the hospital
      It may be helpful to keep track of what medicines work and don’t work for your pain, as well as maintaining a list of current medication, vaccinations, and any emergency room visits. The American Academy of Pediatrics recommends children under the age of 5 receive certain vaccinations and medications to help prevent invasive pneumococcal disease.
  • Keep a daily diary or use a diary app to track your pain and any other symptoms you may have
    If you experience pain, documenting where, when, and what symptoms you have can be helpful when you talk to your healthcare team.



  • What are my baseline / levels?
  • What is my / cell count?
  • What complications are normal for my age group?
  • What treatments are available, and which do you recommend? What side effects are common with these treatments?
  • How do I know if I qualify for a hematopoietic stem cell transplant (bone marrow transplant) or if it is right for me?
  • What current research is being done in sickle cell?

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