Tag Archives: World Sickle Cell Awareness Day

DHEC “Shines the Light” on Sickle Cell

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June 19th is World Sickle Cell Day across the globe! Every year, the international health community recognizes Sickle Cell Disease (SCD) as a debilitating genetic disease that impacts families across the globe. Keeping individuals and communities informed about the struggles that come with daily management of SCD, can help raise awareness as well as debunk stereotypes and stigmas associated with persons who have SCD.  

DHEC joins the Sickle Cell Disease Association of America (SCDAA) to “Shine the Light on Sickle Cell” for World Sickle Cell Day.  Through awareness, education, and research for a cure, we heighten awareness and keep our communities informed of the impact this disease has on over 100,000 Americans.

How Is Sickle Cell Disease Identified?

At birth, every child has a newborn screening test performed to screen for different genetic disorders.  Newborn screening consists of testing newborns for certain harmful or potentially fatal disorders that aren’t otherwise apparent at birth.  In 1987, sickle cell disease was added to this testing panel to screen newborns for sickle cell disease and sickle cell trait for South Carolina.  It is very important to know if your newborn has trait, because you, your partner, and family can determine if additional screening is necessary and what additional steps you should take.

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June 19th is #WorldSickleCellDay

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Today (June 19th) is World Sickle Cell Day!  Every year, the international health community recognizes Sickle Cell Disease (SCD) as a debilitating genetic disease that impacts families across the globe. Keeping individuals and communities informed about the struggles that come with daily management of SCD, can help raise awareness as well as debunk stereotypes and stigmas associated with persons who have SCD.   

SCD affects millions of people worldwide and is particularly common among people originating from sub-Saharan Africa, Saudi Arabia, India, South America and Central America, and Mediterranean countries, such as Turkey, Greece and Italy.

SCD affects approximately 100,000 Americans and occurs in about 1 out of every 365 African-American births. Individuals living with SCD suffer from both acute and chronic complications that require frequent contact with the medical system. These complications include acute sickle cell pain, fever, and acute chest syndrome (ACS), which is the term used for a number of different findings that includes chest pain, cough, fever, hypoxia and new lung infiltrates.

Here are some quick facts about SCD:

  • Sickle Cell Disease is a group of inherited red blood cell disorders. The red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle” and the cells die early, which causes a constant storage of red blood cells. Healthy red blood cells are round and move through small blood vessels to carry oxygen to all parts of the body.
  • To get SCD, the trait must be inherited from both parents who already have the SCD trait. People with the trait usually do not have any of the signs of the disease and live a normal life, but they can pass the trait to their children.
  • SCD is diagnosed with a simple blood test.  It is most often found at birth during routine newborn screening tests. Early diagnosis and treatment are important.
  • There are several treatment options available for individuals living with different complications of SCD, but the only cure for SCD is a bone marrow or stem cell transplant.  Transplants are very risky, and can have serious side effects, including death.  For the transplant to work, the bone marrow must be a close match (usually a brother or sister). 

SCD and COVID-19

Amid the COVID-19 pandemic, there is significant concern that the overlap of lung disease from COVID-19 with ACS may result in increased complications and amplification of healthcare utilization among individuals with SCD. Patients with SCD often have underlying cardiopulmonary co-morbidities that may predispose them to poor outcomes if they become infected with COVID-19. Source: hematology.org. 

Below are recommendations from the Sickle Cell Disease Association of America (SCDAA) for patients with SCD regarding COVID-19:

  • Patients and parents should be educated about COVID-19 signs and symptoms and the importance of physical distancing to limit chances of exposure and infection.
  • Patients and parents should receive counseling to continue to monitor for fever or other signs of infection. Call  hospital, doctor, or nurse first for advice on where to go for an evaluation.
  • Be sure that patients have an ample supply of all prescribed medication at home (including analgesics) to manage both acute and chronic pain.
  • Patients should adhere closely to the correct use of medications.

SCD Partnerships

DHEC is committed to educating the community and public about the availability of resources and services for individuals and families living with sickle cell disease.  DHEC’s Division of Children and Youth with Special Health Care Needs (CYSHCN), provides assistance to persons with sickle cell disease by covering services, such as, medical expenses, physician visits, durable medical equipment, medical supplies, and prescription drugs.  Assistance is offered to both children and adults who meet eligibility requirements. 

Additionally, CYSHCN engages with the four Sickle Community Based Organizations in the state — the James R. Clark Memorial Sickle Cell Foundation, – Louvenia D. Barksdale Sickle Cell Anemia Foundation, – Orangeburg Area Sickle Cell Foundation and – COBRA Human Services Agency Sickle Cell Program – to ensure persons living with SCD have access to community resources and support services. 

World Sickle Cell Day Shines Light on Need for Support, Services

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Malerie Hartsell, MPH, CHES
Program Coordinator
Children with Special Health Care Needs

Each summer, children with sickle cell disease spend a week at Camp Burnt Gin in Wedgefield, South Carolina, enjoying a fun camping experience while learning about the blood disorder, treatment and ways to manage the disease.

The experience is a result of a partnership between the S.C. Department of Health and Environmental Control’s (DHEC) Children with Special Health Care Needs (CSHCN) program and Palmetto Health, which conducts educational activities during the week that foster disease management, positive self-esteem, confidence and independence, while giving the youngsters a positive childhood experience.

“I used to think I was different from everyone else,” one young camper told CSHCN Program Manager, Jessica Drennan last summer during camp. “But then I came to camp and made friends with people just like me. We can go swimming and play basketball and have fun like all the other kids.”

That’s what efforts such as that at Camp Burnt Gin and World Sickle Cell Day are all about: helping those diagnosed with this disease live as normal a life as possible.

World Sickle Cell Day, which is June 19, seeks to raise awareness of sickle cell disease (SCD) and the struggles those diagnosed with the disease and their families go through as well as support and encourage research, treatment and management of the disorder.

 What is SCD? SCD is a blood disorder that causes sickling of the red blood cells, which diminishes the amount of oxygen the red blood cell can carry throughout the body.  Persons who have SCD suffer from crises — episodes of intense and excruciating pain that may be in one or multiple parts of the body when sickle-shaped red blood cells become stuck in a blood vessel and cause a disruption of blood flow in that particular area.  While people are most familiar with sickle cell anemia, someone can also have sickle cell thalassemia, sickle beta thalassemia, or one of the other variations of sickle cell.  The different types of sickle cell are caused by different genetic mutations.

People born with the sickle cell trait usually do not have the symptoms of sickle cell disease, but they could pass the trait on to their children. If one parent has the trait and the other does not, their children won’t inherit SCD but each has a 50 percent chance of having the trait. If both parents have the trait, each of their children has a 50 percent chance of carrying the trait and a 25 percent chance of having SCD.

Who is affected?

While sickle cell disease affects millions of people throughout the world, it is more common among African-Americans. It is estimated that SCD affects 100,000 people in the United States.

 How is DHEC involved?

Under the Bureau of Maternal and Child Health, Division of Children’s Health and the DHEC Lab, the Newborn Screening Program includes tests for SCD, sickle C disease, sickle B thalassemia, and variant hemoglobinopathy disorders and traits, including sickle cell trait.  After a diagnosis is confirmed,  the Children with Special Health Care Needs Program assists South Carolinians by covering medical service expenses, such as physician visits, durable medical equipment, medical supplies, prescription drugs, information and/or referral, and support services. In addition, they provide care coordination, information and referral and support services.

Through partnerships with four community based organizations — the James R. Clark Memorial Sickle Cell Foundation, the L.D. Barksdale Sickle Cell Anemia Foundation, the Orangeburg Area Sickle Cell Foundation and the COBRA Human Services Agency Sickle Cell Program — more persons with sickle cell are able to obtain services and support.  These organizations work tirelessly to provide education and counseling, testing for sickle cell trait, family support and education for hospital staff.