Shining a light on World Sickle Cell Awareness Day. Learn more about this rare blood disorder (2024)

Around 100,000 people in the U. S. — including an estimated 600 to 700 people in Delaware — and millions more around the world have sickle cell disease.

Sickle cell disease primarily affects those of African and Latin/Hispanic descent, and many people have never heard of it or have little understanding of how the condition may impact others. Working to change this, in 2008, the United Nations General Assembly established World Sickle Cell Awareness Day to increase recognition of sickle cell disease as a public health problem.

On June 19, World Sickle Cell Awareness Day, community-based organizations and medical providers will light their buildings red to raise awareness of the disease through its “Shine the Light on Sickle Cell” campaign. In Delaware, ChristianaCare and the Sickle Cell Association of Delaware hope the campaign will increase knowledge of sickle cell disease and make it as commonly discussed and understood as COVID or HIV.

Taking care of people with sickle cell disease requires everyone to work together, according to Stephanie H. Guarino, medical director of the Comprehensive Sickle Cell Program andCenter for Special Health Care Needs at ChristianaCare.

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"Learn about your own hemoglobin or sickle cell trait status, raise awareness of sickle cell disease and advocate for programs and resources to address the health of the whole person," Guarino said in a statement.

ChristianaCare will stage a table from 8:30 a.m. to 3 p.m. on June 14 in the lobby of its Wilmington Hospital campus to increase awareness about sickle cell disease. Manned by caregivers, community-based organizations and patients, it will offer information about blood and bone marrow donation and community resources.

The Sickle Cell Association of Delaware will host a blood drive on June 19 at Cornerstone Fellowship Baptist Church. The marquee will be lit red as a part of the “Shine the Light on Sickle Cell” campaign. June 19 is also Juneteenth and the church is holding a special observance.

The difference between sickle cell trait and sickle cell disease

Sickle cell is a hereditary blood disorder. When a child inherits just one copy of the sickle cell gene, the condition is known as sickle cell trait. People with one copy of the gene have a higher chance of surviving malaria.

If a person inherits two sickle cell genes — one from each parent — they can develop sickle cell disease. The condition is characterized by sticky, crescent-shaped red blood cells that block blood flow, leading to reduced oxygen supply and damage to every organ in the body. People living with sickle cell disease may experienceintense pain and are highly susceptible to infections and other serious health issues.

There are limited treatment options available for individuals with sickle cell disease. Until recently the only long-term solution has been a bone marrow transplant. The best results are seen when donors are siblings with similar genetic immune systems, but this is only possible for 15% of patients.

In December 2023, the FDA approved two gene-editing technologies to treat the disease by changing the genetic code.

5 celebrities who lived with sickle cell disease

Since the unearthing of his gold-laden tomb in 1922, King Tutankhamen, better known as King Tut, the enigma surrounding the young Egyptian pharaoh has fascinated many. One of the lasting mysteries is how he died at around 19-years-old. While the exact cause of his death remains debatable, studies on his mummified remains indicate he lived in poor health. In 2010, German scientists determined that the young ruler more than likely suffered from sickle cell disease.

If the researchers' conclusion is indeed fact, King Tut would be considered one of the earliest known individuals to have suffered from this rare blood disorder. Here are some well-known figures who are known to have been affected by the painful condition, according to Sickle Cell 101:

Miles Davis: Iconic trumpeter, composer and bandleader who revolutionized jazz music. He stopped touring in 1975 due to sickle cell disease affecting his legs.

Tionne "T-Boz" Watkins: a member of the best-selling American girl group, TLC. Watkins revealed her diagnosis in 1996 and later became a spokesperson for a sickle cell disease organization.

Albert "Prodigy" Johnson: Half of the hip-hop duo Mobb Deep. Johnson wrote “You Can Never Feel My Pain” to reflect on his struggles with the disease.

Moses Anthony Davis, aka "Beenie Man": Grammy Award-winning Jamaican dancehall deejay. Founded a foundation to support people, especially young individuals, with sickle cell disease, Jamaica’s most common genetic disorder.

Bolaji Badejo: Nigerian actor known for playing the alien in Ridley Scott’s 1979 film, "Alien."

You cancontact Anitra Johnson atajohnson@delawareonline.com.

This article originally appeared on Delaware News Journal: Shining a light on World Sickle Cell Awareness Day