About Sickle Cell
Sickle cell disease (SCD) is an inherited blood disorder that affects the red blood cells. Normal red blood cells are round and shaped like a donut. They carry oxygen and nutrients throughout the body. Sickle cells, however, are abnormally shaped and cannot carry oxygen well, and they have a shorter life span than normal red blood cells. Sickle Cells are rigid and their “sickle” shape causes them to clog blood vessels, preventing the delivery of oxygen to tissues and organs.
The most common complication of sickle cell is a vaso-occlusive crisis (VOC) or "pain crisis," when sickled blood cells stick together and clog blood vessels, limiting or preventing blood flow. These attacks may occur at any time, but can also be triggered by extreme dehydration, heat, cold, or other environmental factors. VOCs can happen in any part of the body can vary in severity and duration. Sickle cell disease also causes fatigue, higher risk of infections, stroke, necrosis, loss of appetite, and other serious complications throughout the body and organ systems. Having a care team you know and trust is crucial to navigating life with sickle cell, or for supporting a loved one with sickle cell. We are here to connect you with needed resources!
Genetics
Sickle cell disease (SCD) is inherited if you get the trait from each of your biological parents
Widespread Support
There are over 50 nonprofits in the U.S. dedicated to raising awareness for SCD
Prevalence
There are over 100,000 individuals living with SCD in the U.S.
Blood Donation
Individuals with sickle cell trait (SCT) are still able to donate blood
Pain Crises
Sickle-shaped blood cells get caught in blood vessels and cause painful episodes, called a "pain crisis" or "vaso-occlusive crisis" (VOC)
Epidemiology
Sickle cell trait (SCT) developed out of a resistance to malaria
Sickle Cell Trait
Individuals who carry the gene for SCD have what is known as sickle cell trait (SCT). Trait carriers may not know they have the trait and rarely have health complications, except under very extreme conditions.
If two people who have sickle cell trait conceive a child, they have a one in four, or 25% chance of having a child with SCD.
TREATMENTS
for sickle
cell disease
There are a few treatment options for sickle cell disease, both to treat and manage complications, as well as newer, curative options. The drug Hydroxyurea is now being widely used as a treatment for sickle cell and has had a beneficial effect for many sickle cell patients. In 2017, Endari was approved as the second pharmaceutical product for the disease. Adakveo and Oxbryta were approved in 2019 and can also be used to treat complications. **See the notice below regarding Oxbryta**
Bone marrow transplant (BMT), also known as stem cell transplant, is a more invasive but potential curative option. Two new, curative gene therapies were approved by the FDA in late 2023 and have already been used to cure sickle cell. Conventional treatment consists of managing the health problems as they occur. Treatments should be decided in consultation with your doctor or hematologists.
