Your Sickle Cell Care Team
Sickle Cell
Managing your sickle cell requires support. It’s important to remember you’re not alone—friends, family, and healthcare professionals are available to help. Building a strong relationship with your doctors may help you get the
care you need and deserve.
care you need and deserve.
“I'm really hopeful with the new treatments that have come and that are coming
for sickle cell disease.”
— Gina, Parent
Care Team Members
Not all care teams look the same. Depending on your needs, your care team may include:
General Practitioner
Your general practitioner, also known as a Primary Care Provider (PCP), serves as a major point of contact between you and your extended healthcare team. Talking openly with your doctor about your symptoms can help you build out your care team.
Hematologist
A hematologist is a doctor who specializes in treating diseases of the blood. Your hematologist will work with you and your family to help manage and treat sickle cell.
A cardiologist specializes in diseases that affect the heart and cardiovascular system. They may work alongside your hematologist and pulmonologist to monitor symptoms that affect your heart and blood vessels.
A nephrologist is a doctor that focuses on diseases that affect the kidneys. They can help monitor and treat renal complications due to your sickle cell.
A neurologist treats disorders that affect the brain, spinal cord, nerves, and muscles. They may help monitor you for complications such as a stroke.
An ophthalmologist is a doctor who specializes in eye and vision care. They may work with you to monitor and detect any sickle cell-related problems to the eye.
A pain care team may include a physical and occupational therapist, a psychologist, and a pain management specialist. Together they can provide you with support both physically and mentally.
- A pain management specialist can work with you to evaluate, diagnose, and treat different types of pain. They may work with a physical therapist and psychologist to ensure your pain management plan is comprehensive.
- A physical and occupational therapist can aid in promoting and/or restoring physical abilities so you can function on your own.
- A psychologist—a person who specializes in mental health—may provide additional support for any psychological effects you experience due to chronic pain.
A pulmonologist is a doctor that treats conditions of the lungs and respiratory system. You may work with a pulmonologist to treat any pulmonary complications, such as acute chest syndrome and pulmonary hypertension.
A psychiatrist is an expert who can treat mental health matters with medication. They may work with you to help you with psychological effects, such as depression or anxiety, as a result of your sickle cell.
A community health worker specializes in health and social services and works with people in underserved communities who have chronic health conditions. They can work within communities or hospitals and may be able to help you and your loved ones with health education, social support, and practical day-to-day monitoring and management of sickle cell.
A geneticist or a genetic counselor is a professional who specializes in genetic conditions. They can help you understand how sickle cell might affect you when family planning, as well as diagnose family members who may have sickle cell.
A transplant specialist is a doctor that has expertise in hematopoietic stem cell transplants (HSTCs), also known as bone marrow transplants. You may meet with a transplant specialist to consult about eligibility for a transplant. Hematopoietic stem cell transplants are a potential cure for sickle cell. However, they are generally only considered in children and adolescents because the risk of complications increases as a person gets older. Research for HSTCs in adults with sickle cell is ongoing.
A nutritionist is a food and nutrition expert who works to assess nutritional and health needs. A nutritionist can work with you to develop a diet that meets your body’s unique needs with sickle cell.
“I have a great support system—my grandmother, my mother, my uncle. I have amazing friends, even people in my life who don’t really know much about sickle cell, but because they know what affects me, it’s like, OK, I want to know more.”
—Renisha, Living With Sickle Cell
Your Sickle Cell Community
It’s important to have people you can lean on for support. Identifying how sickle cell affects you can make it clearer as to how your community may be able to support you and advocate for better care. In addition to your care team, patient support groups or community-based organizations can provide information, assistance, and support to you and your family. Although everyone’s experience is different, it can be helpful to connect with others living with sickle cell.
Having sickle cell has really pushed me to do more research. I have to focus on making sure I’m taking care of myself. Because if there’s something that I want to do, I can’t let sickle cell stop me from that.”
Having sickle cell has really pushed me to do more research. I have to focus on making sure I’m taking care of myself. Because if there’s something that I want to do, I can’t let sickle cell stop me from that.”
CORY
Living With Sickle Cell
Working With Your Care Team
While sickle cell affects everyone differently, achieving change in care is possible. Working with your care team to overcome conscious and unconscious medical bias can help open communication and build trust. Together, you can work towards achieving your own personal goals with sickle cell. Here are some ways to develop a strong partnership with your care team:
1 |
Be open and honest about any sickle cell pain, symptoms, or concerns you may be having. Your care team wants to help you as best they can. |
4 |
Keep notes of healthcare issues between appointments, and bring them to future visits so you are prepared to discuss any concerns with your doctor. |
2 |
Taking notes at doctor’s visits, or asking a friend or loved one to come along can help you track information discussed during the visit. If your doctor is willing, consider recording your conversation to refer back to. |
5 |
Start your visit by telling your doctor what you’d like to discuss. Check your list of topics before you go to ensure all your issues are addressed. |
3 |
Learn how to access your medical records, and see if they are available online. This may make it easier to view information from past appointments such as test results, medication history and notes from past appointments. |
6 |
Be active in conversations with your doctor. It may be helpful to ask your doctor to provide written information that you can reference after your visit. Don’t be afraid to ask questions until you understand. |
1 |
Be open and honest about any sickle cell pain, symptoms, or concerns you may be having. Your care team wants to help you as best they can. |
2 |
Taking notes at doctor’s visits, or asking a friend or loved one to come along can help you track information discussed during the visit. If your doctor is willing, consider recording your conversation to refer back to. |
3 |
Learn how to access your medical records, and see if they are available online. This may make it easier to view information from past appointments such as test results, medication history and notes from past appointments. |
4 |
Keep notes of healthcare issues between appointments, and bring them to future visits so you are prepared to discuss any concerns with your doctor. |
5 |
Start your visit by telling your doctor what you’d like to discuss. Check your list of topics before you go to ensure all your issues are addressed. |
6 |
Be active in conversations with your doctor. It may be helpful to ask your doctor to provide written information that you can reference after your visit. Don’t be afraid to ask questions until you understand. |
Becoming an active partner in your sickle cell management can help you and your healthcare team create a set of goals for a long-term care plan.
What Can You Do?
Work with your healthcare team to understand how their unique roles and responsibilities allow for a stronger partnership and better management of you and your loved ones’ overall physical and mental well-being.