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Sickle Cell Anemia FAQs

What is sickle cell anemia?

Sickle cell anemia is an inheritable red blood cell disorder. Normal red blood cells are round while these blood cells are shaped like a crescent or sickle.  Because these cells are abnormally shaped, they do not last as long which causes anemia.  These sickle cells can also get caught in blood vessels, consequently causing a blockage in blood flow.  This can result in pain and organ damage.  It is a life-long disease with high morbidity and mortality.

What causes sickle cell anemia?

Sickle cell anemia is not contagious; children inherit it from their parents.  When sickle cell anemia is inherited, the child is passed two sickle cell genes, one from each parent.

What are the signs and symptoms of sickle cell anemia?

Individuals are born with sickle cell anemia, but symptoms are not immediate.  Typically, symptoms begin to show at around four months old.  Symptoms and the severity of symptoms vary amongst individuals.  Some may experience mild symptoms while others may experience symptoms at such a severe level that they may require hospitalization. 

The most common symptoms of this disease include fatigue and feeling weak.  Severe or long-lasting cases of this disease can lead to damage to organs such as the heart, brain, lungs, kidney, spleen, and others.  Extremely severe cases can cause death.  People living with sickle cell anemia regularly deal with chronic pain, often in their bones.  Individuals may also experience a sudden pain called a “sickle cell crisis” which can occur anywhere in the body.  Sickle cell anemia most commonly affects the bones, lungs, abdomen, and joints.  Additional signs of this disease include:

  • Shortness of breath and/or dizziness
  • Headache
  • Coldness in the hands and feet
  • Pale skin
  • Jaundice
  • Chest pain
  • Leg ulcers that do not heal

Are there tests available that can detect sickle cell anemia?

There is a blood test available that can reveal if an individual has the sickle trait or sickle cell anemia.  New-borns are often tested soon after being born. 

Who is most at risk for sickle cell anemia?

Sickle cell anemia affects about 100,000 Americans.  It occurs in about 1 in every 365 African-American births and in about 1 in every 16,300 Hispanic-American births. 

What is the prognosis for individuals affected by sickle cell anemia?

Life expectancy varies for individuals living with this disease.  Some may live without symptoms for years while others may not live past infancy.

What is the purpose of this study?

The purpose of this study is to assess the efficacy, safety, and tolerability of ACZ885 (canakinumab) in adolescent and young adult patients with sickle cell anemia.