Monitoring Sickle Cell
Sickle Cell
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.
Hemoglobin
cells of the immune system that help defend the body against infection
Reticulocytes
immature red blood cells that form and mature in the bone marrow before being released into the blood
Platelets
tiny blood cells that help the body form clots to stop bleeding
White blood cells
cells of the immune system that help defend the body against infection
Sickle Cell
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.
Hemoglobin
cells of the immune system that help defend the body against infection
Reticulocytes
immature red blood cells that form and mature in the bone marrow before being released into the blood
Platelets
tiny blood cells that help the body form clots to stop bleeding
White blood cells
cells of the immune system that help defend the body against infection
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 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.
Ask your care team questions
Some questions you can ask:
- What are my baseline hemoglobinHemoglobina protein in red blood cells that helps carry oxygen throughout the body/reticulocyteReticulocytesimmature red blood cells that form and mature in the bone marrow before being released into the blood levels?
- What is my plateletPlateletstiny blood cells that help the body form clots to stop bleeding/white bloodWhite blood cellscells of the immune system that help defend the body against infection 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?
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 healthcare team and practice shared decision-making to make sure you are receiving comprehensive care. This includes going to your appointments regularly to ensure 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.
Learn who makes up a sickle cell care team and how your care team can help.
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Recognizing how sickle cell impacts your life may help spark important discussions with others to bring changes in your care and the care of your loved ones. How does sickle cell affect you?