Living with Sickle Cell Anemia

Too often, people living with sickle-cell disease are unaware they have it.

You’re attending your son’s football game when suddenly one of the athletes collapse and begins to suffer shortness of breath. This is sometimes a sad and painful reality for many people. Neither the child nor parents knew that he carried the trait for sickle-cell anemia and with heavy physical exertion; sickle-cell can trigger a number of bodily crises - one being respiratory failure. 

Photo Credit: Sebastian Kaulitzki / Shutterstock

The nature of sickle-cell anemia is that the red blood cells, which carry oxygen through the blood stream, are oddly shaped and can cause blockage in the blood vessels very easily. 

Baldwin-resident, Nikki Gooden-Williams, whose young-adult son is living with the disease, established an organization called S.Y.N.C. Now - which aims to serve those impacted by sickle-cell anemia, by forming a support community. “I feel there is a failure of the healthcare profession in properly educating patients and caring for them, especially those in the minority communities,” says Gooden-Williams. 

When body tissues lack a sufficient supply of oxygenated blood they are damaged—and if left without it, they die. For the sake of preventing recurring episodes of sickness, a person that has sickle-cell anemia might live a sheltered life due to the many variants that could trigger an attack—external factors like temperature extremes. Although there are no visible wounds, they suffer an  internal pain that others can’t see. 

A common misconception is that the sickle-cell disease is exclusive to the African American community. The truth is it affects everyone—there is no discrimination. In fact, Hispanics are the second most impacted by the sickle-cell disease. An estimated three million people in America have the disease.

Testing for sickle-cell anemia begins with a test called hemoglobin electrophoresis, which tests the blood, and it’s almost always conducted when a child is born in the hospital. Usually, physicians encourage parents to take steps that ensure their child’s well being in the future. One of those suggestions is to avoid strenuous exercise. 

How can someone with sickle-cell disease live a normal life? Williams says, “Taking the proper treatment and watching your physical activity and recognize that sickle-cell is not a one size fits all disease. There are many effective treatments to manage the disease—even  procedures such as bone marrow transplants have cured the illness in children.” 

Gooden-Williams hopes to garner more support and advocacy for those impacted. S.Y.N.C. Now: Sickle-cell Youth Network & Connect is membership-based and is seeking youth and volunteers to join them on their website: www.syncnow.org.