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The State of Sickle Cell Disease in Kentuckiana

Updated: Sep 5, 2019

Sickle Cell Disease (SCD) affects approximately 100,000 Americans according to the Center for Disease Control; 1 out of every 500 African American births. It is the most common inherited blood disorder which disproportionately affects African Americans. In Kentucky, there are approximately 1,106 suffering from the disease, with an estimated 500 cases in the Louisville area. Because of the lack of designated treatment for adults during the period of 1983 to 2017, an accurate count of sufferers is not available. SCD is a genetic disorder caused by an irregular red blood cell that causes the blood to change shape and clot in the blood vessels. The blockage cuts off oxygen to the organs, which leads to severe pain, swelling, organ damage or failure, infections, headaches, liver problems, strokes, heart problems, and premature deaths. This condition is also known as sickle cell anemia (SCA).

Those born with sickle cell disease are the product of two parents with sickle cell trait. Parents with sickle cell trait have a 1 in 4 (25%) chance of every pregnancy producing a child with the disease. When a child with SCD is born, his or her fetal hemoglobin protects them from sickle cell episodes, but as they grow the fetal hemoglobin decreases. With that decrease in fetal hemoglobin comes the sickle cell crisis. Crisis are painful episodes of clotting in the vessels that are often treated by a blood transfusion and prolonged hospital stays. Improved health care and the introduction of preventive drugs such as hydroxyurea, which increases the production of fetal hemoglobin, has shortened those hospital stays and eliminated the 14-year life expectancy rate of the 1900’s.

The Hematology/Oncology Departments of the University of Louisville and Norton Healthcare have combined their efforts to increase lifespans and improve the quality of life for sickle cell patients. Dr. Shawn Glisson of Norton Cancer Institute reports that the clinics are coordinating their efforts to teach and move adolescents into adult care. When young adults transition, they are educated on how to properly care for their unique condition. They are tracked and monitored to ensure that his or her information is not lost to follow up. Louisville has become part of a structured and intricate study that will help establish new national standards for the care of sickle cell patients to improve health care outcomes.

Illustration of a Sickle Cell Blockage
Hemoglobins Improperly Forms Long Chains Giving Cell Its Sickle Shape And Prevents Adequate Uptake

With our progress, the sickle cell population continues to grow, whether due to lack of knowledge of the disease, patients living longer, or because of those still living under the stigma of not wanting anyone to know they are affected. We, as a community, must slow the progression of the disease. Through increased visibility (living longer), we can dispel the stigmatism, education will better the way the disease is manages, and sickle cell testing. The Sickle Cell Association of Kentuckiana and the Sickle Cell Support Group participate in health fairs, church events and many other venues to get the word out about sickle cell and who to contact for help. But everyone is not doing their part. The African American community must acknowledge that there is a problem and it affects us all, not just those families suffering. The problem is that a large population of the community does not know that they carry the sickle cell trait. While testing is mandatory for all newborn babies, the results are often forgotten by the time the person reaches child bearing age. I often tell people that say that there is no sickle cell in their family that we never know who our children will bring home. The results of that union could be heartbreaking when you find out that your new baby will suffer their entire life from sickle cell disease.

Another area of the African American community that must recognize their need to be involved is our churches. The church is the center of the African American culture and the community structure. They have the most influence and access to those suffering from SCD, their families, and the ability to better their physical and spiritual lives. Our pastors are our community leaders who can open doors for the support organizations and bring needed assets to the table.

Ms. Joann Orr, a pioneer in the SCAD movement in Kentucky

As African Americans, we struggle to achieve success in our endeavors. Those chosen few who have reached the plateau of no more hunger, not having to worry about cost, and are able to enjoy life any way they see fit is a dream come true. To those members of our community, I ask that you reach back and pull up one less fortunate than yourself. Sickle Cell is a very expensive disease. Parents and sufferers are made to choose between paying rent, utilities, and bills, or paying medication co-pays, transportation cost or any of the hundreds of things that a sickle cell requires on a daily basis. The Sickle Cell Association of Kentuckiana (SCAK) strives to make their service available to every member of the sickle cell community. As a small organization, SCAK is a 501(c)3 who operates on fundraisers, donations, and the good graces of the community. It is our hope that the business community will join us, step up, get involved, and share our goal of eradicating this disease.

As part of the 2019 Juneteenth Celebration, The Sickle Cell Association of Kentuckiana hosted a forum, “The State of Sickle Cell In Kentuckiana” on June 19, 2019 at the African American Heritage Center, 1701 Muhammad Ali Blvd, Louisville.

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