How Alabama organizations are helping individuals with sickle cell disease all year long

September is Sickle Cell Awareness Month, but several Alabama-based organizations work all year long to educate, advocate and offer support to families affected by the disease. Sickle Cell Disease organizations offer genetic counseling, testing for the sickle cell trait, and a host of other services for individuals battling the disease and their families.

“Sickle Cell Disease is out of sight, out of mind for those who are not impacted, but it is a tough and lifelong journey for those who experience it,” said Dr. LaMonica Herron-McCoy, executive director of the Sickle Cell Disease Association West Alabama Chapter. “Those of us who are not impacted should be more supportive by helping with advocacy, fundraising and empathy.”

Approximately 70,000 to 100,000 Americans have sickle cell disease, according to the American Society of Hematology. The Centers for Disease Control and Prevention (CDC) describe sickle cell disease (SCD) as a group of inherited red blood cell disorders. Pain develops when sickle-shaped red blood cells block blood flow through tiny blood vessels to the chest, abdomen and joints. This can cause pain and other serious complications such as infections, acute chest syndrome and strokes. Additionally, the sickle cells die early, which causes a constant shortage of red blood cells.

SCD is diagnosed with a simple blood test and is most often diagnosed at birth or within the first year of life. Symptoms of the disease can start as early as 4 months.

More than 90% of people affected by the disease are non-Hispanic Black, according to the CDC.

“But it’s not just in the African American community,” said Gerald Alfred, executive director of the Sickle Cell Disease Association of America Mobile Chapter Inc.

Sickle cell disease is more common not only in people of African descent (including African Americans), but also Hispanic Americans from Central and South America and people of Middle Eastern, Asian, India and Mediterranean descent.

In the United States, SCD reduces a person’s estimated life expectancy by more than 20 years and quality-adjusted life expectancy by more than 30 years. But sickle cell disease organizations across the nation – including those based in Alabama – are determined to change those statistics.

“A cradle to grave organization”

Sophia Leverson, executive director of the Sickle Cell Association Central Alabama Chapter, calls the chapter a “cradle to grave organization” that offers a variety of services throughout the year and throughout the lives of people with Sickle Cell Disease, people Leverson calls “warriors.”

“When a family first gets their child’s diagnosis, we are there offering newborn screening and counseling,” Leverson said. “If a caretaker loses their job while caring for their child in crisis, we are there with utility and rent assistance. When that young warrior gets accepted to the college or trade school of their choice, we are there with a scholarship to help them on their way. Throughout their lives, warriors can count on us to provide individual and group counseling, programming, mentorship and even food assistance.”

The Central Alabama chapter recently launched Garden Raised Whole-foods Optimized Nutrition, or GROWN, an urban gardening program that offers free fruits and vegetables and nutrition education to those living with sickle cell disease.

“Finally, when a warrior is called home, families can count on us for assistance laying their loved one to rest,” Leverson said.

The Alabama-based SCD organizations work year-round to raise awareness by participating in health fairs and other community events. They also host open houses to inform local residents about the services they offer. SCD organizations help those affected by the disease access the care they need by providing transportation to medical appointments and assistance with medication costs. The organizations may also offer support with rent, utilities and food for those in need. In addition, some offer counseling and support groups.

Upcoming events

Most SCD organizations provide testing for the SCD trait but in September, the Sickle Cell Disease Association of America Mobile Chapter Inc., is kicking things up a notch.

“This month, here in Mobile, our schedule consists of trait testing every day,” said Alfred of the Mobile chapter. “And we’re going to have open house every Thursday from 10 a.m. to 12 p.m. to allow an opportunity for individuals to come in and have one-on-ones with the social workers and community health workers and even myself.”

The Mobile chapter is also partnering with Alpha Phi Alpha fraternity to host a blood drive on September 27. Additionally, a series of awareness commercials are planned to air on Mobile area radio stations throughout the month.

The Sickle Cell Foundation of the River Region in Greater Montgomery has been busy, too.

That group is hosting a two-day radiothon from 6 a.m. to 6 p.m. on September 25 and 26 with the Big KD 94.1 to raise money and awareness. Other organizations also helped out with the cause. Omega Psi Phi fraternity hosted a 5K run in support of SCD on September 13 at the Montgomery Union Station and Trainshed. And H & W Riders hosted an event on September 20 at Wind Creek.

On September 18, the Central Alabama chapter was in Talladega at the Sheila Ash Garrett Center for the first Sickle Cell Red Party. And on September 25 from 3 p.m. to 4 p.m. Leverson and her team will be constructing a huge red ribbon for Sickle Cell Disease awareness on the lawn of the organization’s main office at 3813 Avenue I
in Birmingham.

“SCD Warriors belong to every race, creed and socioeconomic background,” Leverson stressed. “There is still no cure for this extremely painful condition. While major strides have been made in research, we have a long way to go. The fight is far from over and your local sickle cell organization needs your help and support.”

Sickle Cell Disease Organizations in Alabama

 Sickle Cell Disease Association of America Central Alabama Chapter
Serving Blount, Calhoun, Cherokee, Clay, Cleburne, Cullman, Etowah, Jefferson, Randolph, Shelby, St. Clair, Talladega and Walker counties.
3813 Avenue I Birmingham, AL 35218
205-780-2355

 

Sickle Cell Disease Association West Alabama Chapter Inc.
Serving Fayette, Green, Hale, Lamar, Marion, Pickens, Sumter, Tuscaloosa and Winston counties
700 Energy Center Blvd. Suite 403 Northport, AL 35473
205-758-1761

 

Sickle Cell Foundation of the River Region in Greater Montgomery
Serving Autauga, Butler, Chambers, Chilton, Coffee, Coosa, Crenshaw, Dallas, Elmore, Lowndes, Montgomery, Tallapoosa and Wilcox counties
3180 U.S. Hwy 80 West, Montgomery, AL 36108
334-286-9122 or 1-888-767-4255

 

Southeast Alabama Sickle Cell Association Inc.
Serving Barbour, Bibb, Bullock, Dale, Geneva, Henry, Houston, Lee, Macon, Marengo, Perry, Pike and Russell counties
4201 W MLK Hwy Tuskegee, AL 36083
334-727-6120

 

Sickle Cell Disease Association of America Mobile Chapter Inc.
Serving Baldwin, Choctaw, Clarke, Conecuh, Covington, Escambia, Mobile, Monroe and Washington counties
1453 Springhill Avenue Mobile, AL 36604
251-432-0301

 

North Alabama Sickle Cell Foundation Inc.
Serving Colbert, Dekalb, Franklin, Jackson, Lauderdale, Lawrence, Limestone, Madison, Marshall and Morgan counties
224 Church Street Suite B Huntsville, AL 35801
256-536-2723