Sickle cell disease (SCD) is an inherited blood disorder in which red blood cells may become sickle-shaped and harden. For a baby to be born with sickle cell disease, both parents must carry a sickle cell trait or genes for another hemoglobin like HbC, HbE, or beta-thalassemia. Sickle cell disease is not contagious, and there is no universal cure.
There are several screening techniques to help identify sickle cell disease. Newborn screening can help identify SCD and expedite early management and treatment. Adult screening can help identify if someone has SCD or is a carrier for the SCD trait. Sickle stroke screening, also known as Transcranial Doppler (TCD) screening, can help identify people with brain abnormalities as a result of SCD who are at high risk for ischemic stroke and brain injury. Organ screening can help identify damage to organs such as the kidney, eye, and heart.
The Facts
• About 1 in 13 African Americans carry the sickle cell trait, and many do not know they have it.
• An estimated 100,000 people in the U.S. have SCD.
• Approximately 2,000 babies are born with SCD annually in the U.S.
• On average, diagnosis is made at birth.
• People of many ethnic backgrounds can have SCD.
• Latinos have the second most common incidence in the U.S.
The Complications
The blockage of blood flow caused by sickled cells leads to complications including:
• Chronic severe and unpredictable pain
• Anemia
• Frequent infections
• Swelling in extremities
• Fatigue • Delayed growth
• Vision problems/blindness
• Lung tissue damage
• Kidney disease
• Stroke
• Shortened life expectancy
Sickle cell disease is a global health problem. Still, there are steps we can all take to combat this disease, including donating blood to support transfusions, advocating for better treatment, education, and research, educating others about sickle cell disease and sickle cell trait, and getting tested for sickle cell trait if you are of African descent and do not know your status.
For those who suffer from the disease, some treatment options are available. Over-the-counter pain relievers are commonly used to treat chronic pain. Other medicines can be prescribed to decrease some SCD complications or to reduce the number of sickle cell pain crises. And blood transfusions can help relieve symptoms of SCD and potentially prevent complications.
People with SCD can live full lives by being proactive in their care. Here are some tips to help you or someone you know with SCD stay as healthy as possible. Staying healthy with sickle cell disease involves:
• Pain management
• Preventing infections from common illnesses such as the flu
• Self-care including eating well, exercising, and staying hydrated
• Medications to reduce the severity of sickle cell disease
• Regular preventive care including vaccinations and health and dental checkups
• Quality medical care from doctors and nurses who are educated about SCD
• Building a support system of friends and family
• Connecting with a patient support group or a community-based SCD organization for information and assistance
