Local partnership merges to spread sickle cell awareness

"As a little girl I knew I was sick, but I didn't know what it was," said Zuleika Zapata, 36. "As a teen, I grew out of it - during that time, I didn't have any episodes. But when I had my son [at 23] I had pain in my joints and I couldn't walk for the intensity of the pain." Zapata was born with sickle cell anemia. Sickle cell is a disease that affects millions of people around the world, primarily those of African descent. The disease, according to the National Heart, Blood, and Lung Institute, causes the body to create red bloods cells abnormally resembling a sickle. These sickle-shaped cells can cause blocking in the blood flow within blood vessels which can lead to an array of other health issues.

"Joints deteriorate," said Zapata. "See the blood carries oxygen and then there is a lack of oxygen [from the disease]. I have pulmonary hypertension, both hips replaced, surgery on my left shoulder, brain surgery, septum deviation, my lungs have collapsed . . . it's not like you die from the disease - it's the symptoms," she continued with a soft laugh.

According to the Sickle Cell Disease Association of America, some of the medical troubles that arise from the disease are lung tissue damage, pain episodes, stroke, and the blockage of efficient blood flow to organs such as the kidneys, spleen, and liver. There is no cure for sickle cell anemia.

Zapata is part of the Howard University Center for Sickle Cell Disease's collaborative effort with the National Institute of Health, Howard University Hospital, and Children's National Medical Center. Together, they have created a network of services and opportunities for individuals with the disease. According to Barbara Harrison, the Associate Director of Community Outreach and Education at the Center for Sickle Cell Disease, every September, the network allies with Faces of Our Children, Inc., the YMCA, Georgetown University Hospital's Division of Pediatric Hematology/Oncology, the Sickle Cell Association of the National Capital Area, Inc., and many others to participate in the National Stomp Out Sickle Cell Walk for those afflicted with the disease in the metropolitan area.

After the walk, which began and ended at the Howard University Hospital grounds, there were free giveaways on behalf of Commerce Bank, according to Harrison, as well as donation requests.

"Everyone gets involved," said Harrison. She said that she regretted that participants were charged to take part this year although it "offsets the cost of the walk. The leftover funds goes towards awareness advocacy [and the programs] . last year was free, but this year was costly. "

Angela Mayson, Community Liaison for the Department of Pediatrics, added that the programs and what they offer are "helpful for those without health insurance. [There was an] emphasis on getting tested," she said in reference to the NIH Blood Bank that was actively testing individuals for the trait.

The Howard University Center for Sickle Cell Disease provides services such as no cost screening for the trait, as well as individuals willing to come into a variety of environments, including schools, to advocate for sickle cell awareness. The center also provides a weekly outpatient clinic, pediatric services, genetic counseling (services that analyze the chances of a couple having a child born with sickle cell anemia), and group support meetings.

Zapata, who has been in the country for nine years, also said that "the money goes towards research paying for the programs that they offer for transportation, medication - they've played a big role since I've been here.