United Way of Southwest Alabama Safety Net Series: Sickle Cell Disease Association

Updated: Sep. 15, 2021 at 2:29 PM CDT
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We continue our United Way of Southwest Alabama Safety Net Series with Sickle Cell Disease Association. Aleida Johnson and Laventrice Ridgeway joined Joe and Chelsey on Studio10 with details about the association and how they help others.

Sickle Cell Disease Association of America – Mobile Chapter, Inc. (SCDAA-MC) is a nonprofit, 501c3, social services organization. The mission of the organization is: “Empowering our clients and families with knowledge through quality, comprehensive programs and services.” SCDAA-MC is a United Way partner agency and a part of the Community Safety Net. The association provides case management services for the clients and their families to help with access to medical, social, and educational services, as well as help them cope emotionally with sickle cell disease.  Other programs include the After School Tutorial Program (ASTP) and Summer Enrichment Program (SEP); both are provided free of charge to school-aged children in 1st through 12th grade. Additionally, the association provides some transportation service for the programs to pick the students up after school and take them home in the evening.

The Newborn Screening Counseling Program provides counseling and education service to parents with babies born with sickle cell trait and other abnormal hemoglobin conditions. As a result of a partnership with the Alabama Department of Public Health, the association receives the names of babies born with sickle cell disease, sickle cell trait, and other abnormal hemoglobin conditions. With this information, the Certified Sickle Cell Educator/Counselors on staff are able to contact the parents to provide them with education about their child’s trait status.

The Sickle Cell Disease Educator/Counselor Certification Training Program equips those working with the sickle cell community to provide education and counseling for persons with SCD and other hemoglobinopathies. Currently, SCDAA-MC trains Sickle Cell Educator/Counselors from across the country.

Finally, SCDAA-MC provides testing services free of charge for individuals to learn their sickle call status. The association works with a reference lab, Arup Laboratories, to test the blood samples drawn by the association’s lab staff.

Sickle Cell Disease is a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such infection, acute chest syndrome and stroke.

The most common type of SCD is sickle cell anemia. Other types of sickle cell disease include sickle hemoglobin C disease and sickle beta thalassemia. Individuals with SCD have red blood cells with abnormal hemoglobin, such “S” or “C”. Hemoglobin is the substance in the blood carries oxygen throughout body. When the red blood cells sickle and clogs the arteries, causing deprivation of oxygen, over time it can cause severe complications to vital organs such as the brain and lungs.

Currently, there is no universal cure for sickle cell disease. There has been some success with bone marrow transplant and gene therapy. However, neither are viable options for all SCD patients. There are drugs used to manage SCD including hydroxyurea, Endari, Adakveo, Oxbryta, and pain-relieving medication.

Address: 1453 Springhill Avenue, Mobile, AL

Telephone: (251) 432-0301

Email: info@scdmobile.org

Website: www.scdmobile.org