The Voices of Sickle Cell Disease
By TARA PARKER-POPE
Casey Templeton for The New York Times Brothers Riley Dews, 4, left, and Tracy Dews, 8, were both born with sickle cell anemia. Managing their disease has become a routine part of their family life.

In today’s Patient Voices audio feature, six people talk about living with sickle cell disease.

Sickle cell disease is an inherited blood disorder that affects red blood cells, resulting in anemia and severe pain. The condition gets its name from the fact that an unusual type of hemoglobin causes red blood cells to become crescent-shaped, similar to the curved blade of a sickle.

When the oddly shaped cells block small blood vessels, less blood flows to that part of the body, damaging tissue and causing sudden pain called a “sickle cell crisis.” The pain can last for hours to as long as a week.

The illness is most common in people with roots in Africa, South or Central America, Caribbean Islands, India, Saudi Arabia and some Mediterranean countries. It occurs in one out of every 500 African-American births and one out of every 36,000 Hispanic-American births, according to the Sickle Cell Disease Association of America.

In Patient Voices, you’ll hear from Cassandra Dobson, 50, of the Bronx, who decided to become a nurse as a result of a severe sickle cell crisis. “Doctors are so easily bored with treating sickle cell patients, because most of the time what they focus on is pain management only,” she says. “They really have to focus on the whole patent.”

Shanoah Moore, 8, of Cincinnati talks about how sickle cell disease affects children.

“I’m still a regular kid, and I still go to school,” she says. “I know when I’m getting sick because my head starts getting warm, and my mom knows when because my eyes kind of turn yellow. It feels like someone is just squeezing my legs. Sometimes it’s very, very painful.”

To hear all the voices of sickle cell disease, go to Patient Voices.