Frequently Asked Questions (FAQs) About Sickle Cell
Last updated: June 2021
If you live with sickle cell disease (SCD) or are a friend, family member, or caretaker of someone with the condition, you might have some questions. In this article, we answer some of those questions and share resources.
What is SCD?
SCD is a group of red blood cell disorders that can be inherited. Normally, red blood cells are round and flexible. But people with SCD have rigid red blood cells that are C-shaped. This causes red blood cells to die early and block blood vessels, which can lead to severe complications.1
What are the different types of SCD?
There are several forms of sickle cell, including the following:
- HbSS or sickle cell anemia is the most common and severe form. People with sickle cell anemia experience chronic low levels of red blood cells, causing frequent complications.
- HbSC is a less severe form of the condition, but individuals are also likely to experience anemia.
- HbS beta-thalassemia is more commonly known as "thalassemia," and is considered to be less severe than sickle cell anemia (HbSS). Individuals with thalassemia have no or low amounts of hemoglobin.
- HbSD, HbSE, and HbSO are less common forms of SCD. Symptoms and complications of these forms vary.
- HbAS or sickle cell trait rarely results in symptoms or complications, but individuals who have sickle cell trait may pass it on to their children.
Learn more about the different forms of SCD.
How common is SCD?
Approximately 100,000 people in the U.S. live with SCD, and another 2.5 million people live with sickle cell trait. SCD is most common among individuals whose ancestors lived in Africa, South and Central America, and India.2
Who inherits the disease?
SCD and sickle cell trait are inherited conditions. Individuals whose parents both have SCD will also have SCD. Individuals with parents who have neither the trait nor the disease will not have either condition. Learn more about how SCD is passed down from parents to their children.
How is SCD diagnosed?
Newborn screening for SCD and sickle cell trait has been mandatory in the U.S. since 2004. Early diagnosis has allowed for improved treatment and care for children with SCD.
What health issues are related to SCD?
Common symptoms and complications of SCD include pain, acute chest syndrome, acute pain crises, joint problems, and strokes.
Are there treatment options?
Treatment options are focused on reducing the severity or frequency of complications. The most common forms of treatment in the U.S. include the chemotherapy drug hydroxyurea and blood transfusions.
Is there a cure?
The only cure for SCD is a bone marrow transplant, also called a stem cell transplant. This is a procedure in which your own bone marrow stem cells are replaced by that of a donor. The new healthy stem cells produce normal red blood cells instead of sickle cells.
Unfortunately, it can be hard to find the best donor match, and not all people who get transplants are cured. There are also some serious side effects associated with the procedure.3
How can SCD symptoms and complications be managed?
The management of SCD symptoms and complications include:
- Staying hydrated
- Regular exercise
- Stress management
Individuals with SCD should also consider avoiding triggers such as:
- Extreme heat or cold
- Sudden changes in temperature
- High altitudes
Where can I find resources to help pay for healthcare?
Treatments and hospital visits for SCD can be costly even with health insurance. But fortunately, there are some programs that can help. In the United States, some organizations assist with health payments, including the Patient Acess Network (PAN) Foundation and Sickle Cell Foundation. Learn more about these organizations and other resources for paying for care.
If you live outside the United States, you can find resources for SCD care through the Sickle Cell Disease Coalition.
Please note that Sickle-Cell.com and its parent company, Health Union, are not affiliated with the above organizations.
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