Newly Diagnosed: Taking the First Step on Your Journey

Becoming educated is a good place to start on your journey with sickle cell disease. Whether you are a patient or a caregiver, knowing as much as possible about the disease will help you be a more active participant in your or your loved one’s healthcare. Learn more below about sickle cell disease, its causes, its symptoms, and how it’s diagnosed.


Sickle cell disease is an inherited disease that affects red blood cells with an abnormal version of hemoglobin, the protein that carries oxygen throughout the body. The altered hemoglobin is known as hemoglobin S, or sickle hemoglobin, because it causes normally oval-shaped red blood cells to assume a sickle shape.

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Generally, symptoms of sickle cell disease — which range from mild to those requiring hospitalization — include anemia, pain, swelling of extremities, recurrent infections, slow growth and vision issues. Sickle cell patients often experience episodes of acute pain called vaso-occlusive crises. This is the most common disease complication and a frequent reason for hospitalization.

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Sickle cell disease is caused by a mutation of the HBB gene that produces hemoglobin protein. Red blood cells with sickle hemoglobin become rigid, making it difficult for them to get through smaller blood vessels. This prevents or slows blood flow, resulting in oxygen being unable to reach places it’s supposed to.

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Sickle cell disease is diagnosed with a blood test that checks for hemoglobin S protein. Medical professionals use blood tests to screen newborns for a variety of diseases, including sickle cell disease. If this test shows evidence of sickle hemoglobin, a second blood test is done to confirm a hemoglobin S diagnosis.

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Living With Sickle Cell Disease

Sickle cell disease can cause debilitating pain crises and put patients at increased risk for infections, among other symptoms. It also can interfere with daily living and make everyday tasks difficult to manage, but there are ways to manage the condition and help improve patients’ quality of life.

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Want to Connect With Others?

A great way to get more information is directly from those in the sickle cell community. Visit the Sickle Cell Disease News forums to discuss issues, ask questions, and share your experiences with others.

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