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VCU School of Nursing sickle cell disease expert answers questions in Twitter chat

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Suzanne Ameringer, Ph.D.

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.

In the United States, the disease affects up to 100,000 people, the majority of whom are African-American. Globally, it affects millions, and the number of infants born with sickle cell anemia is expected to increase by approximately 30 percent by 2050, according to a study published in the weekly medical journal PLOS Medicine.

September is National Sickle Cell Awareness Month and, in recognition of the awareness month, VCU Health hosted a VCU Health Chat from 11 a.m. to noon on Sept. 21 with Suzanne Ameringer, Ph.D., associate professor in the Department of Family and Community Health Nursing at VCU School of Nursing.

Ameringer is currently working on a two-year study funded by the National Institutes of Health that aims to examine improved approaches to self-managing exercises in adolescents and young adults with sickle cell anemia.

During the chat, she answered questions about how to diagnose, treat and live with the symptoms caused by sickle cell disease.

Below are Ameringer’s replies to some of the questions raised on Twitter:

 

What is sickle cell disease?

Sickle cell disease is an inherited blood disorder. Throughout the disease, some red blood cells take on a crescent shape instead of a round shape and clog the veins, which blocks blood flow to organs.

What are the most common symptoms of sickle cell disease?

One of the biggest issues caused by sickle cell disease is pain caused from sickle cells blocking blood flow in veins. The disease also causes fatigue, a yellowish color of the skin or in the whites of the eyes, anemia, infection and stroke.

What causes sickle cell disease?

Sickle cell disease is caused by a defect in the beta globin gene that changes how hemoglobin works in the red blood cells. If each parent carries the gene that has the defect, then each child has a 25 percent chance of getting the disease. One in every 365 black children has sickle cell disease. Others at risk are from Hispanic, Southern European, Middle Eastern and Asian Indian descent.

How is sickle cell disease treated?

It is important to see a doctor for a proper diagnosis and treatment. The doctor should be a specialist, such as a hematologist. An experienced primary care doctor is also capable of diagnosing and treating the disease. After diagnosis, patients should have regular screenings for complications. Physicians can also provide treatment for anemia and related symptoms such as pain or infection. Hydroxyurea is a medication used to reduce certain complications such as the number of pain episodes.

Is there a cure for sickle cell disease?

Currently, the only potential cure for sickle cell disease is a bone marrow transplant. Not everyone can get a bone marrow transplant because a matched donor is necessary. It is important for healthy people to join the bone marrow transplant registry to increase the potential for matched donors.

What are some tips for living with the fatigue of sickle cell disease?

Maintain a healthy lifestyle with a healthy diet, get plenty of sleep and stay physically active. Pace your daily activities to provide times for rest, drink plenty of fluids and avoid strenuous exercise.

Why should someone with sickle cell disease avoid strenuous exercise?

Mild to moderate exercise is recommended but strenuous exercise can cause pain. Take breaks when exercising, particularly when you start to feel tired, and drink plenty of fluids when you’re exercising. Also avoid exercising when it is too hot or cold outside, as this can cause additional pain.

Can you tell us about the study you are doing on exercise and sickle cell anemia at VCU School of Nursing?

In general, children and young adults with sickle cell disease are not as physically fit as their peers. We are currently conducting a study on exercise in adolescents and young adults with sickle cell disease. Our goal is to develop more specific guidelines for exercising that can be used to exercise safely and improve physical fitness. Improving physical fitness may help increase energy and decrease the fatigue caused by sickle cell disease.