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Monitoring Sickle Cell
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.
“I try to talk to my primary care. I want them to fully understand what I’m going through, and I want them to know how I’m feeling. If I didn’t communicate, they won’t know what’s going on with me. So I feel like just being proactive, that’s the best thing that’s really pushed me to stay healthy.”

—Cory, Living 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 checkups 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 studies 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 medications, vaccinations, and any emergency room visits.

  • 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.

Ask your care team questions

Some questions you can ask:

  • 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?
  • What medications are prescribed for me and why?  How often should I be taking them?
  • How do I know if I qualify for a hematopoietic stem cell transplant (bone marrow transplant) or if it is right for me?
  • What is my baseline hemoglobin level?

Managing and Preventing Complications

You can actively manage sickle cell by working with your healthcare team to help manage and/or prevent complications. It’s important to find doctors who you can trust and communicate with clearly.
Comprehensive care goes beyond relieving pain; it requires active monitoring and managing. Certain chronic complications of sickle cell may go unnoticed and can cause irreversible organ damage and early death. Building a strong partnership among your healthcare team and loved ones can help you get the support you need for your overall health and well-being. Comprehensive care goes beyond relieving pain; it requires active monitoring and managing. Certain chronic complications of sickle cell may go unnoticed and can cause irreversible organ damage and early death. Building a strong partnership among your healthcare team and loved ones can help you get the support you need for your overall health and well-being.

What Can You Do?

Spark involvement with your care team to make sure you are receiving comprehensive care that includes careful monitoring and management of acute and chronic complications of your sickle cell. It’s important to routinely talk to your healthcare team about treatment options and a treatment plan that’s right for your sickle cell.

Learn who makes up a sickle cell care team and how your care team can help.
Every voice, no matter how big or small,
can spark a conversation and action to
help drive change for sickle cell.


Recognizing how sickle cell impacts your
life may help spark important
discussions with others.
How does sickle cell affect you?