50% to 90% of babies born with sickle cell disease will die before their fifth birthday

Sickle cell disease (SCD) is one of the major silent killers of infants and children in the developing world, particularly in Sub-Saharan Africa. Here’s what you need to know.

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While simple public health measures such as newborn screening, vaccinations, and early interventions have been proven to greatly improve childhood survival in several countries,SCD) continues to be a major global public health issue. The United Nations has designated it as a global health problem requiring urgent action by member countries and other relevant stakeholders.

According to the latest estimates, approximately 300 000 babies are born with SCD every year, and about 300 million people worldwide have the sickle cell trait. The disease impacts many different populations around the world, but disproportionately affects people from Sub-Saharan Africa. It is also common among people with ancestry from South America, Central America, and India, as well as several Mediterranean countries, such as Italy and Turkey.

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What is sickle cell disease?

“Sickle cell disease is a chronic, lifelong, genetic blood disorder,” explains Novartis spokesperson, Dr. Gary Sopher.

Medical research literature defines SCD as one of the most common genetic blood disorders in the world. It affects the shape of red blood cells and can make blood cells stickier than usual. When blood cells stick to one another they can form clusters in the bloodstream. These clusters can block the flow of blood and oxygen and cause damage to the blood vessels and organs. When blood cell clusters get big enough, they can block the blood flow and lead to a painful crisis. Sickle cell pain crises disrupt patients’ lives physically, socially, and emotionally—and can worsen long-term health.

SCD symptoms include:

  • Chronic pain
  • Recurrent acute pain episodes
  • Severe anemia
  • Enlarged spleen
  • Increased risk of recurrent infections
  • Acute chest syndrome
  • Stroke (clinical and silent)
  • Headache
  • Dizziness and seizures
  • Eye problems, including blindness
  • Heart disease
  • Kidney and liver problems
  • According to Mayo Clinic, priapism is a prolonged erection of the penis, which usually continues for hours beyond or isn’t caused by sexual stimulation. It is usually painful.
  • Pale skin and jaundice (yellowing of the skin or eyes).

Creating awareness

Education about the disease has been identified as one of the key interventions. To remove the stigma and improve understanding of SCD, Novartis has partnered with Dr. Alexander Kumar, a world-renowned documentarian and storyteller, to help tell the story of SCD in a relatable and visually powerful way – with a major focus in sub-Saharan Africa where the stigma is rife, and the disease is most prevalent.

In a series of photos, essays, and videos that showcase the faces of SCD and how it impacts their surrounding communities, the documentary hopes to capture the reality of living with sickle cell disease to not only inspire support and companion, but to also help empower those living with the disease beyond the stigma.

Too often, patients with SCD experience shortened lifespans, living only to their 40s. However, early diagnosis, ongoing patient education and awareness and simple medical care, including access to blood transfusions and hospital treatment, can all improve patients’ life expectancy.

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