Sponsored by VCU Health
By J. Chevonte’ Alexander
September is National Sickle Cell Awareness Month. First officially recognized by the federal government in 1983, National Sickle Cell Awareness Month calls attention to sickle cell disease, a genetic disease that researchers estimate affects between 90,000 and 100,000 Americans. Public awareness is key to understanding the disease and finding good solutions to improve treatment and quality of life.
Sickle cell anemia is a genetic, life-limiting disease in which chronic anemia, sickled red blood cells, and inflammation cause debilitating pain and fatigue, as well as long-term complications to bodily organs.
Urban Views Weekly had the opportunity to chat with Suzanne Ameringer, Ph.D., associate professor in the Virginia Commonwealth University School of Nursing’s Department of Family and Community Health Nursing. The focus of Dr. Ameringer’s research is on biobehavioral mechanisms of symptoms and improving symptom self-management in adolescents and young adults with chronic and life-threatening conditions. Ameringer’s interest in sickle cell anemia grew from when she cared for patients with the disease.
In 2015, The National Institutes of Health recognized Virginia Commonwealth University’s School of Nursing for a study that is the first to examine improved approaches to self-managing exercises in adolescents and young adults with sickle cell anemia.
“Individuals with sickle cell anemia tend to be less active and fit than healthy peers. Thus they are at a greater risk for poorer health outcomes including obesity and cardiovascular problems”, Ameringer said. “Today’s adolescent and young adult generations are more active and we want to find ways and better guidelines for them to exercise and live the most normal life as possible.”
“I have been a nurse for over 35 years and this is a horrible, painful disease and I have always wanted to make life better for them if I could,” she said.
Here are some facts on sickle cell:
- With SCD, red blood cells become hard, sticky and look like a C-shaped farm tool called a “sickle”. They break apart easily, causing anemia and can clump and stick to the walls of bloodvessels, restricting blood flow. This can result in severe pain, potential stroke and permanent damage to the brain, heart, lungs, kidneys, liver, bones and spleen.
- Sickle cell trait is a gene that can be carried by one or both parents. The trait itself usually doesn’t cause problems and isn’t diagnosed as a disease.
- Often thought to be discovered only in African-Americans, SCD also affects Hispanics, South Asians, Caucasians from southern Europe, and people from Middle Eastern countries.
VIDEO: Sickle Cell Anemia: A Patient’s Journey
Tips to Staying Healthy
- Get regular checkups. Regular health checkups can help prevent some serious problems.
- Prevent infections. Common illnesses, like influenza quickly can become dangerous for both children and adults with SCD. The best defense is to get a flu shot every fall and to stay up-to-date on other immunizations.
- People with SCD should drink 8 to 10 glasses of water every day and eat healthy food. They also should try not to get too hot, too cold, or too tired.
- Look for clinical studies. New clinical research studies are beginning all the time at Mount Sinai and elsewhere, with the goal of finding better treatments for SCD. Study participants gain early access to experimental medicines and treatments.
- Get support. People with SCD should find a patient support group or other organization in the community that can provide information, assistance, and support.“Sickle cell anemia is a life-limiting disease and there is a dire need to increase awareness about the disease,” comments Dr. Ameringer. “Individuals with sickle cell often feel isolated and alone because the disease is so rare, and it is up to our community to change this. There is a great need for funding for research to help improve their lives.”
- Ameringer also noted that since the disease is rare, if you know someone with sickle cell anemia or you have it yourself, we encourage you to find studies to participate in to help find better solutions to improve treatment. There is something we all can do!