Your Sickle Cell Care Team
Sickle Cell
Hematologist
Cardiologist
Nephrologist
Neurologist
Pain Care Team
Pulmonologist
Psychiatrist
Sickle Cell
Hematologist
Cardiologist
Nephrologist
Neurologist
Pain Care Team
Pulmonologist
Psychiatrist
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 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
Working With Your Care Team
Taking active steps in your sickle cell care matters. Going to appointments and having conversations with a healthcare team regularly can help you proactively manage any sickle cell symptoms you or your loved ones may experience. Research shows that people who partner with their healthcare teams to understand sickle cell may be more satisfied and achieve better outcomes with their care. Shared decision-making—the process of communicating, planning, and working together with your healthcare team to make healthcare decisions—is one way to achieve change in your sickle cell care. 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 |
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. |
2 |
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. |
5 |
Keep notes of healthcare issues between appointments, and bring them to future visits so you are prepared to discuss any concerns with your doctor. |
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 |
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. |
4 |
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 |
Keep notes of healthcare issues between appointments, and bring them to future visits so you are prepared to discuss any concerns with your doctor. |
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. |
Achieving change in sickle cell starts with speaking up. If you need help starting the conversation with your healthcare team, think about how you would complete the following sentences and bring them up at your next appointment:
Lately, I’ve been struggling with (anxiety, fatigue, etc)…
How can I best prepare for (regular appointments, emergency room visits, etc)…
I want to start planning (travel, cross-country move, etc)…
My long-term goal is to (go to college, have kids, etc)…
Lately, I’ve been struggling with (anxiety, fatigue, etc)…
I want to start planning (travel, cross-country move, etc)…
How can I best prepare for (regular appointments, emergency room visits, etc)…
My long-term goal is to (go to college, have kids, etc)…
These conversations can help your care team better understand the different ways sickle cell impacts your life on a daily basis and what you want in the future. Together, you can work towards achieving your own personal goals with sickle cell. Download the Spark Good Care Guide to learn more about what a care plan can look like and how to work with a care team to plan for the future with sickle cell.
These conversations can help your care team better understand the different ways sickle cell impacts your life on a daily basis and what you want in the future. Together, you can work towards achieving your own personal goals with sickle cell. Download the Spark Good Care Guide to learn more about what a care plan can look like and how to work with a care team to plan for the future with sickle cell.
These conversations can help your care team better understand the different ways sickle cell impacts your life on a daily basis and what you want in the future. Together, you can work towards achieving your own personal goals with sickle cell. Download the Spark Good Care Guide to learn more about what a care plan can look like and how to work with a care team to plan for the future with sickle cell.
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 (HSCTs), 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 HSCTs 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'm really hopeful with the new treatments that have come and that are coming for sickle cell disease."
I'm really hopeful with the new treatments that have come and that are coming for sickle cell disease."
GINA
Parent
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.
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.
Every voice, no matter how big or small, can spark a conversation and action to help drive change for sickle cell. Sign up to stay connected through email with resources, support, ways to connect with others, and more information about sickle cell.
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?