Tag Archives: National Sickle Cell Awareness Month

“Sickle Cell Matters”: DHEC observes Sickle Cell Awareness Month

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Sickle Cell Disease (SCD) is a debilitating genetic disease that impacts many families across the globe. Every September is recognized as National Sickle Cell Awareness Month to help focus attention on the need for research and treatment of sickle cell disease.

This year’s theme, Sickle Cell Matters, also highlights the need to raise awareness about the daily struggles of those living with Sickle Cell Disease (SCD) as well as dismantle the stereotypes and stigmas associated with persons who have the disease. 

SCD affects millions of people throughout the world. Although SCD is most common among African Americans in the United States, it can also affect Hispanics and people whose ancestors come from countries in South Asia (such as India), southern Europe (such as Greece and Italy), and the Middle East (such as Saudi Arabia and Lebanon).

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September is National Sickle Cell Awareness Month

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National Sickle Cell Awareness Month brings attention to this crippling illness, a genetic disease that many people around the world struggle with and must manage daily.  Recognizing Sickle Cell Awareness Month helps to dismiss stereotypes and stigmas associated with persons who have sickle cell disease.  Not only does this month shine light on sickle cell disease (SCD) but also sickle cell trait (SCT).  Here is some -information about SCD and SCT.

Quick Facts About SCD:

  • SCD is a blood disorder that causes sickling of the red blood cells.
  • Sickle-shaped red blood cells become stuck in blood vessels and cause disruption of blood flow – this results in crises.
  • SCD affects 100,000 people in the United States.
  • SCD is an inherited blood disorder from the person’s parent, like any other genetic trait, such, as hair color and texture, and eye color.

Quick Facts About SCT:

  • SCT is where a person inherits one sickle cell gene and one normal gene.
  • SCT is not a disease and is generally asymptomatic.
  • SCT affects 1 million to 3 million Americans and 8 to 10 percent of African Americans.
  • Persons with SCT can pass the trait on to their children.

 

What is the Likelihood a person will inherit SCD or SCT?

Sickle Cell DHEC Infographic

DHEC’s Sickle Cell Program

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
  • prescription drugs

Assistance is offered to both children and adults who meet eligibility requirements.  Additionally, CYSHCN partners with the Newborn Screening Follow-Up program to ensure infants who are newly diagnosed with sickle cell disease have a medical home to address treatment and care for their disease.

Through partnerships with four sickle cell community-based organizations — 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 — more persons with sickle cell disease are able to obtain services and support.

South Carolina’s Efforts to Address Services for Sickle Cell Patients & Families

As a part of the agency’s commitment to educate the community and public about the availability of resources and services for individuals and families living with sickle cell disease, DHEC collaborated with the South Carolina Sickle Cell Disease Advocacy Team to develop “A Call to Action: South Carolina Sickle Cell Disease State Plan.”  This three-year plan provides a framework for addressing gaps in sickle cell disease care as well as highlights strategies and resources to support patients with SCD.

The full plan be viewed at Sickle Cell Plan_CR-012241_Final.

sickle cell plan

If you have questions about the DHEC sickle cell program, contact the CYSHCN office at 803-898-0784.  For general information about sickle cell disease, visit cdc.gov/sicklecell or http://www.nhlbi.nih.gov/health/health-topics/topics/sca.

Raising the Awareness Bar on Sickle Cell Trait and Sickle Cell Disease

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September is National Sickle Cell Awareness Month, let’s raise the awareness bar to highlight sickle cell trait and sickle cell disease.

What is Sickle Cell Disease?

 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, other variations of sickle cell, or mutations, include sickle cell thalassemia, sickle beta thalassemia, and others.

What is Sickle Cell Trait?

 SCT results when a person inherits one sickle cell gene and one normal gene from either of their parents. Persons with sickle cell trait usually do not have any of the symptoms of SCD, but they can pass the trait on to their children.

How are SCT and SCD related?

 An individual who has SCD has a family history of SCT – meaning the person’s parent(s) have sickle cell trait or sickle cell disease. SCD is inherited when a child receives two sickle cell genes from each parent. For someone who has SCT, the likelihood of having a child that has SCD or SCT is different. If both parents have SCT, there is a 50 percent chance the child will have SCT, a 25 percent chance the child may have SCD, and a 25 percent chance the child will not have SCD or SCT.

SickleCellAwareness 2018

The urge to increase awareness on sickle cell trait and disease is apparent across several organizations.  The Centers for Disease Control and Prevention released new informational materials and videos of individuals’ personal experiences living with sickle cell disease or sickle cell trait. To view these videos, visit cdc.gov/ncbddd/sicklecell/materials/video.html.

What is South Carolina’s response?

The South Carolina Sickle Cell Disease Advocacy Team (SCSCDAT) was established in 2017 with one common goal – to improve the treatment and care received by individuals and their families who have sickle cell disease. A multidisciplinary team comprised of physicians, hematologists, government agencies, non-profit organizations, healthcare management organizations, and individuals living with SCD and their family members, has been working on a statewide sickle cell disease plan to address the lack of resources to proficiently care and treat individuals of all ages living with sickle cell disease. The plan will help coordinate and improve collaboration in the areas of education, outreach, treatment, and funding.

Community-based organizations at work

Currently, DHEC maintains partnerships with four sickle cell community-based organizations — the James R. Clark Memorial Sickle Cell Foundation, the Louvenia D. Barksdale Sickle Cell Anemia Foundation, the Orangeburg Area Sickle Cell Foundation and the COBRA Human Services Agency Sickle Cell Program. Through these partnerships, more people with sickle cell are able to obtain services and support. These organizations work to provide education, counseling, testing for sickle cell trait, and family support.

Although September is National Sickle Cell Awareness Month, increasing public and community knowledge about sickle cell is a 365-day initiative. Raise the awareness bar on sickle cell trait and sickle cell disease.

If you have questions about testing for you or your family, you can visit one of the four sickle cell community-based organizations. For more general information about sickle cell, visit cdc.gov/sicklecell or www.nhlbi.nih.gov/health/health-topics/topics/sca.

National Sickle Cell Awareness Month

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

Did you know September is National Sickle Cell Awareness Month?

Efforts to recognize Sickle Cell Month began in 1983 when the Congressional Black Caucus introduced the resolution to Congress.  President Reagan signed the resolution in August of 1983 making September National Sickle Cell Awareness Month.   Since then, organizations across the globe have increased public awareness surrounding this crippling illness.

By recognizing National Sickle Cell Awareness Month, more individuals are educated about the struggles that come along with daily management of this debilitating genetic disease. Increasing awareness is one way to debunk stereotypes and stigmas associated with persons who have sickle cell disease (SCD) and further highlights risk factors related to SCD, such as having the sickle cell trait (SCT).

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.  sickle cellsPersons 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, other variations of sickle cell, or mutations, include sickle cell thalassemia, sickle beta thalassemia, and others.

Who is affected?  The actual number of persons living with SCD is unknown in the United States, but it is estimated that SCD affects approximately 100,000 people annually. Sickle cell disease also affects millions of people worldwide and it is more common among African-Americans.

What is SCT?  SCT is where a person inherits one sickle cell gene and one normal gene from either of their parents.  Persons with sickle cell trait  usually do not have any of the symptoms of SCD, but they can pass the trait on to their children.

How common is SCT? Sickle cell trait is an inherited blood disorder that affects 1 million to 3 million Americans and 8 to 10 percent of African-Americans. Sickle cell trait can also affect Hispanics, South Asians, Caucasians from southern Europe, and people from Middle Eastern countries. More than 100 million people worldwide have sickle cell trait. (Source: http://www.hematology.org/Patients/Anemia/Sickle-Cell-Trait.aspx)

SCD and SCT are inherited conditions, which means a person may be born with the illness or trait.   SCD or SCT cannot develop overtime nor is it contagious.  SCD is inherited when a child receives two sickle cell genes from both parents. For someone that has SCT, the likelihood of having a child that has SCD or SCT is different.  If both parents have SCT, there is a 50 percent chance the child will have SCT, a 25 percent chance that child may have SCD, and 25 percent chance the child will not have SCD or SCT.sickle-cell-flow-chart

 Care and Treatment

Early diagnosis and monitoring can make a difference in the quality of life and number of years lived for someone with SCD.  The Centers for Disease Control and Prevention recommends:

  • Babies from birth to 1 year of age should see a doctor every two to three months.
  • Children from 1 to 2 years of age should see a doctor at least every three months.
  • Children and adults from 2 years of age or older should see a doctor at least once every year.

Persons with SCD should be referred to a hematologist or an experienced general pediatrician, internist, or family practitioner.

Currently, only hematopoietic stem cell transplantation (HSCT) can cure SCD; however, this is very intensive treatment and not everyone qualifies or can afford this treatment.  To help prevent complications and medicate the acute or chronic pain episodes as they occur, hematologist will start children on daily doses of penicillin at birth up until at least 5 years of age.  Blood transfusions are utilized to help reduce the risk of stroke.  Additionally, hydroxyurea, a drug that increase the levels of fetal hemoglobin has helped reduce pain, hospitalizations, and lung damage.

Visit the CDC’s website to learn more about sickle cell. You also can find information on the National Heart, Lung and Blood Institute site.

Help is available for those challenged by sickle cell disease

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

When a child inherits sickle cell disease it can cause emotional, financial and other strain on a family.

It also raises serious questions, such as “How will our child cope with a disease that can cause sudden extreme, pain-filled episodes?” or “How will our family handle the challenge of caring for a child with a chronic, untreatable illness?”

While families bear much of the load, there are services in place to help, including those available through the S.C. Department of Health and Environmental Control’s Children with Special Health Care Needs program.

What kind of help does Children with Special Health Care Needs offer?

 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. Based off DHEC Lab Newborn Screening data, there are approximately 70 babies born with SCD annually and over 2,400 babies identified to have SCT.

After a diagnosis is confirmed, the Children with Special Health Care Needs Program assist South Carolinians by covering:

  • medical service expenses
  • physician visits
  • durable medical equipment
  • medical supplies
  • prescription drugs

Additionally, Care Coordinators in DHEC Regional offices provide information and/or referral, and support services.

Every summer, children with sickle cell disease spend a week at Camp Burnt Gin in Wedgefield, South Carolina, where they enjoy a fun camping experience while learning about blood disorders, treatment and ways to manage the disease.  The week at Camp Burnt Gin is a partnership between DHEC’s CSHCN program and Palmetto Health, which conducts educational activities during the week that foster disease management, positive self-esteem, confidence and independence, while giving campers a positive childhood experience.

Community based organizations at work

Through partnerships with four sickle cell community based organizations — the James R. Clark Memorial Sickle Cell Foundation, the Louvenia 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 educations and counseling, testing for sickle cell trait, family support and education for hospital staff.

Throughout September, which is Sickle Cell Awareness Month, each community based organization will engage community members in different events to help promote and increase awareness about SCD.

If you have questions about testing for you or your family, you can visit one of the four sickle cell community based organizations.  For more general information about sickle cell, visit cdc.gov/sicklecell or http://www.nhlbi.nih.gov/health/health-topics/topics/sca.

SickleCellSeptemberEvents