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Source: Cleveland Clinic Sickle cell disease (SCD) is one of the most common inherited blood disorders in the United States. SCD is an umbrella term for a group of genetic conditions that affect hemoglobin, the protein in red blood cells that carries oxygen throughout the body, causing red blood cells to become abnormally shaped.
In people living with SCD, red blood cells become hard and curved, often described as being shaped like the letter “C” or a sickle. These misshapen cells do not move through blood vessels as easily as healthy red blood cells and may reduce the amount of oxygen delivered to tissues and organs throughout the body. As a result, SCD can lead to a range of health problems and complications.
SCD occurs in people around the world but is most common among individuals whose ancestors come from parts of Africa, the Middle East, Southern Europe (Mediterranean regions), India, Central and South America, and the Caribbean. While this condition is lifelong, early diagnosis, regular medical care, and advances in treatment can help people with SCD live healthier lives.
Sickle cell disease is an inherited condition, which means that it is passed from parents to their children genetically. To have SCD, a person must inherit two hemoglobin gene changes, with one coming from each parent. SCD is caused by changes in the hemoglobin beta (HBB) gene, which provides the body with instructions for making hemoglobin. All types of SCD involve inheriting at least one HBB gene change that results in the production of hemoglobin S, an abnormal form of hemoglobin. The second inherited gene change may also produce hemoglobin S or another hemoglobin variant associated with SCD.
A person who inherits one HBB gene change associated with hemoglobin S and one typical HBB gene has sickle cell trait (SCT) and is often referred to as a carrier. People with SCT do not have SCD and usually do not experience symptoms related to SCD. However, they can pass the HBB gene change associated with hemoglobin S to their children. Each time a person with SCT has a child, there is a 50% chance of passing on that gene change.
When both parents have SCT, each pregnancy between them has:
Since changes in the HBB gene can be passed from one generation to the next, it is important to know your SCT status, especially when planning a family.
Source: St. Jude Children's Research Hospital Newborn Screening (NBS) helps identify babies with SCD shortly after birth. The test is performed using a few drops of blood collected from a baby’s heel, usually within 24 to 36 hours after birth. Early diagnosis allows treatment and monitoring to begin as soon as possible, helping reduce the risk of serious complications.
The newborn screen is designed to detect SCD but can also identify babies with SCT. Although SCT typically does not require medical treatment, families are informed of the result to help them understand what it means for their child and future family planning. Individuals who are planning to have children can also undergo testing to determine whether they have a hemoglobin gene change associated with SCD. A genetic counselor can help explain test results, discuss inheritance patterns, and answer questions about reproductive and family health considerations.
The Sickle Cell Disease Association of America, Michigan Chapter (SCDAA-MI) serves as the MDHHS's designated medical management center for hemoglobinopathies. Through a network of outreach sites, SCDAA-MI provides confirmatory diagnostic testing, genetic counseling, and social work services for individuals with SCD.
When a newborn receives a positive screening result for SCD, SCDAA-MI contacts the family to explain the result, coordinate confirmatory testing, provide disease education, assist with initiating penicillin prophylaxis when indicated, and facilitate referral to pediatric hematology/oncology services as appropriate.
For newborns identified with SCT, MDHHS and SCDAA-MI work together to notify families of the screening result. Families receive a letter explaining the result and its significance, along with educational materials. A SCDAA-MI patient advocate then follows up by phone to confirm receipt of the information, answer questions, and offer additional education and family testing if desired.
The table and tabs below provide more information about the most common types of sickle cell disease (SCD). Explore each section to learn about the different types, genetics, and symptoms.
| Types of SCD | Gene Changes | Severity | Common Name |
| Hemoglobin SS Disease (HbSS) | Two Hemoglobin S | Most Severe | Sickle Cell Anemia |
| Hemoglobin SC Disease (HbSC) | One Hemoglobin S, One Hemoglobin C | Mild to Moderate | Sickle Cell C Disease |
| Hemoglobin S/Beta Thalassemia | One Hemoglobin S, One beta thalassemia | Variable depending on subtype | Sickle Cell Thalassemia |
The most common and most serious type of SCD is called sickle cell anemia (SCA). SCA happens when a child receives one HBB gene change resulting in hemoglobin S gene from both parents. This type of SCD is also referred to as HbSS since individuals inherit two HBB gene changes resulting in hemoglobin S.
Indivuduals with SCA may develop:
HbSC disease is the second most common type of sickle cell disease (SCD). HbSC disease happens when a child receives one gene change for hemoglobin S from one parent and one gene change for hemoglobin C from the other parent. Both hemoglobin S and hemoglobin C cause red blood cells to not carry oxygen as well as normal hemoglobin.
Babies and young children with HbSC disease can have different experiences. Many have milder symptoms, but some may develop more serious health problems similar to SCA. Some children may have few symptoms early in life, but symptoms can increase as they get older and may become similar to those seen in SCA.
People with HbSC disease may have fewer pain episodes than those with SCA, but health problems can still occur.
Eye, hearing, joint and clotting problems may occur more often in people with HbSC disease than in other types of SCD.
It is very important to follow the doctor’s recommendations for testing and care. This can help lower risk of complications.
Sickle cell beta thalassemia is a type of sickle cell disease (SCD). Sickle beta thalassemia happens when a child receives one HBB gene change resulting in hemoglobin S from one parent and a HBB gene change associated with beta thalassemia from the other parent. Beta thalassemia affects the body’s ability to produce normal hemoglobin. This condition is also referred to as hemoglobin S/beta-thalassemia (HbS/beta-thalassemia).
There are two main sub-types of sickle cell beta thalessmeia:
Together, these inherited gene changes can cause red blood cells to become misshapen and reduce the body’s ability to produce enough healthy red blood cells. As a result, red blood cells can block blood vessels and limit oxygen delivery throughout the body, leading to the symptoms and complications associated with sickle beta thalassemia.
The type and severity of symptoms depend on how much normal hemoglobin the body can make. ThThis varies based on the specific type of sickle beta thalassemia a person has.
The symptoms associated with each sub-type are as follows:
Less common combinations of HBB gene variants can result in rare forms SCD. These occur when a person inherits a gene for hemoglobin S from one parent and a gene for another hemoglobin variant, such as hemoglobin D, E, O, or another rare variant, from another parent. Examples include hemoglobin SD, hemoglobin SE, and hemoglobin SO.
Since these forms of SCD are rare, doctors and researchers have less information about them than they do about more common types, such as HbSS, HbSC, and HbS/beta-thalassemia. As a result, healthcare providers often take a careful, individualized approach to monitoring and treatment.
Symptoms can vary widely from person to person, even among individuals with the same type of rare SCD. Some people may have few or no symptoms, while others may experience complications like those seen in sickle cell anemia. Although these conditions are less well understood because they are rare, pain crises and other sickle cell related complications have been reported, even in individuals with milder symptoms. For this reason, regular medical care and ongoing communication with a healthcare provider are important for supporting overall health and wellbeing.
There are treatments available to help manage symptoms, reduce complications, and improve quality of life for people living with SCD. Treatment is lifelong and is tailored to each individual’s needs.
Treatments may include and are not limited to:
Children and adults living with SCD should receive regular medical care from both a primary healthcare provider and a specialist experienced in treating blood disorders. Doctors who specialize in treating blood disorders, including SCD, are called hematologists.
In recent years, cell and gene therapies have emerged as new treatment options for some individuals living with SCD. These therapies aim to address the underlying cause of the disease and may offer additional treatment possibilities for eligible patients. To learn more about cell and gene therapy for SCD, visit the CMS Cell and Gene Therapy (CGT) Access Model page.
Sickle cell disease (SCD) is a group of inherited blood disorders that affect hemoglobin, the protein in red blood cells that carries oxygen throughout the body. There are several types of SCD, including sickle cell anemia (HbSS), hemoglobin SC disease (HbSC), hemoglobin S/beta thalassemia (HbS/beta-thalassemia), and rarer forms such as HbSD and HbSE. While symptoms and complications can vary from person to person, SCD can affect many parts of the body and requires ongoing medical care and monitoring.
Early diagnosis through newborn screening, regular healthcare visits, and appropriate treatment can help reduce complications and improve quality of life. Understanding your sickle cell trait status and family history can also be important for family planning and making informed health decisions. With advances in medical care and emerging treatments, many people with SCD are living longer, healthier lives.
Find answers to frequently asked questions about sickle cell disease (SCD), sickle cell trait (SCT), and available resources and support.
Sickle cell disease (SCD) is a group of inherited blood disorders that affect hemoglobin, causing the red blood cells to become misshapen and making it harder for them to carry oxygen throughout the body.
Sickle cell trait (SCT) occurs when a person inherits one sickle cell gene and one typical hemoglobin gene. People with SCT do not have SCD and usually do not experience symptoms, but they can pass the sickle cell gene to their children.
A person is born with SCD when they inherit specific gene changes from both parents. SCD cannot be spread from person to person like a cold.
The most common types of SCD are sickle cell anemia (HbSS), Hemoglobin SC disease (HbSC) and hemoglobin S/beta-thalassemia. There are also several rarer forms of SCD.
No. The severity of SCD can vary depending on the type and the individual. Some forms tend to cause more serious symptoms and complications, while others may be milder. Regular medical care is important for all types of SCD.
MDHHS is leading a statewide strategic plan to improve care and support for people living with SCD. Through the Public Health Strategic Plan 2.0 (2026-2030), MDHHS is working to expand access to quality healthcare and support services, promote evidence-based care, improve access to disease-modifying therapies, increase education and awareness, strengthen partnerships with the SCD community, and use data to guide improvements in health outcomes across Michigan.
If your child was identified to have sickle cell trait through Michigan's newborn screening program, SCDAA-MI provides follow-up education and support. If you have questions about your child's newborn screening results or would like additional information about SCT, contact SCDAA-MI or speak to your child's healthcare provider.
Several trusted organizations provide information, educational materials, and support for individuals and families affected by SCD and SCT.