Healthcare Providers and Sickle Cell Disease
Sickle cell disease (SCD) is a group of genetic red blood cell disorders. Most of the time, SCD is treated by doctors called hematologists, who are experts in blood conditions.
Pain specialists may also treat people with SCD because pain crises are common complications. Genetic counselors may help support parents having a child at risk for SCD. SCD can cause complications in many organs, so other types of doctors often treat people with SCD. Some additional specialists may include pulmonologists, ophthalmologists, and maternal-fetal medicine specialists.
General family doctors do not treat many people with SCD. They may not be confident treating SCD-related complications. Studies have found that more than half of family doctors do not treat anyone with SCD and only 20 percent feel comfortable treating SCD.1
Most care for people with SCD is handled by a specialized doctor called a hematologist. This is someone who is an expert in blood conditions. They have experience performing blood tests and managing treatments. They are qualified to do blood transfusions and bone marrow transplants.2
Children usually have a pediatric hematologist to handle their care. They know how to treat pain crises and other complications of SCD in children. As children mature into adulthood, they transition to an adult hematologist. They also learn to manage their own healthcare.3
It can be hard for adults with SCD to find a qualified doctor because there are fewer adult hematologists. Insurance restrictions can also be a barrier to care. Many teenagers with SCD do not feel prepared to take charge of their own care. This often causes delays or pauses in care and worse complications as they transition from pediatric to adult care.4
Acute and chronic pain are common problems for people with SCD. It is common for pain management specialists to be involved in treatment. Pain management specialists are experts in treating chronic pain and can help create a personal pain management plan.5
This plan teaches people with SCD how to treat mild pain at home. This is often done with pain medicines, fluids, and comfort measures. A pain management specialist can also teach pain management skills. These include guided imagery, relaxation, distraction, and deep breathing.5
A pain management plan also helps people with SCD know when to go to the hospital for pain. If pain is increasing and is not relieved by treatment at home, it is good for people to call their doctor and seek emergency care. Hospital doctors use stronger pain medicines that must be monitored.5
People with SCD often have poor interactions with ER doctors. Doctors less familiar with SCD may not believe their reports of pain and label them as “drug seekers.” Finding pain management specialists and ER doctors that people with SCD trust is important.6
Families can discuss the genetics and inheritance of SCD with a genetic counselor or geneticist. Genetic counselors have experience in genetic blood disorders and prenatal counseling.7
If people are unsure what type of SCD they have, it is good to get tested. Testing is available at most hospitals or medical centers, SCD community-based organizations, or local health departments. A genetic counselor can then use this information to discuss risks to the future child.
During pregnancy, prenatal testing can be done to find out if a baby will have SCD, sickle cell trait, or neither.
SCD can cause complications in many different organs. People with SCD often see other specialists depending on their specific situation. These include:
Maternal-fetal medicine specialists
Pregnancy can increase SCD-related health complications, and women with SCD are more likely to experience pregnancy complications. Pregnant women with SCD often seek care from a maternal-fetal medicine specialist. This is a doctor who has experience in managing high-risk pregnancies. Early prenatal care and monitoring throughout the pregnancy can help women with SCD have healthy pregnancies.7,8
Many serious complications of SCD affect the lung and breathing, such as acute chest syndrome. People with SCD often seek treatment from a pulmonologist, who has expertise in treating conditions that affect the respiratory system. Preventing lung disease is important to reduce complications of SCD. Pulmonologists often screen teenagers and adults with SCD for lung function.4
Vision loss can occur when blood vessels in the eye are blocked. People with SCD should have their eyes checked every year to look for damage to the retina. This should be done by an eye doctor, called an ophthalmologist. If possible, it should be done by an ophthalmologist who specializes in retinal diseases.9