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Living a normal life with a rare condition: De’Miya’s story about living with sickle cell disease

Life is never the same for a child diagnosed with sickle cell disease. They must learn the strategies necessary to live a normal live with an uncommon condition. The National Heart, Lung, and Blood Institute estimates between 90,000 and 100,000 Americans are living with sickle cell disease.

“I was afraid, considering I didn’t know much about sickle cell at that time,” said Steffany Fallen, whose daughter, De’Miya Lamb, was diagnosed with the disease around six weeks of age. “I thought my only daughter wouldn’t be able to fully enjoy a good quality of life. I was unsure if her life would be cut short due to her illness.”

Sickle cell disease causes a person’s red blood cells to take on a “sickle” shape, causing them to stick to the walls of blood vessels creating a blockage that can slow or stop the flow of blood. The lack of blood flow can create sudden, severe pain in the area of the body where the blockage occurs.

Augusta University Health offers Lamb and other patients like her treatments they will not find at any other hospital in the CSRA. The Augusta University Sickle Cell Center first opened in 1972. It has been recognized by the international community for its research on new treatment options for those living with sickle cell disease.

“The doctors and staff at the Sickle Cell Center at Augusta Univeristy were extremely helpful,” Fallen said. “They took the time to educate me about my daughter’s diagnosis.”

One of those treatments is the Got Transition model developed by The National Alliance to Advance Adolescent Health. The Georgia Cancer Center at Augusta University is the only health center in the CSRA offering this program. It consists of six core elements taking a team-based approach to educating a patient about what they need to know and how their family can help to manage the disease.

“The Sickle Cell Center provides children like De’Miya with opportunities to engage in various activities that help to build their confidence and empower them to battle sickle cell with all their might,” Fallen said.

The academic health center advantage

There are a number of advantages to choosing an academic health center for care. To learn more, visit auhealthadvantage.com.

To make an appointment and learn about our sickle cell services, call us at 706-721-2171 or visit augustahealth.org/sicklecell.

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