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For Sickle Cell Awareness Month, South Florida family aims to educate others about the disease

South Florida family works to raise awareness of sickle cell anemia
South Florida family works to raise awareness of sickle cell anemia 01:54

FORT LAUDERDALE -- September is Sickle Cell Awareness Month, and while those who have it often report being in pain, millions have the trait and don't even know it.

Yolna Tribulant speaking to CBS News Miami about her family's experience with sickle cell anemia. CBS News Miami

A local South Florida family is living with the disease and hoping to educate others.

"Usually my chest hurts and my throat and I can't breathe," said Emanuel Stephenson, who, along with his brother, have been diagnosed with the ailment and have been receiving treatment for years at Broward Health Medical Center.

Yolna Tribulant, the boys' mother, has the sickle cell trait, and so does her daughter.

"It's kinda like a silent disease because people don't have enough awareness of the disease," Tribulant said. "They look like they're OK, but really they're not all right. They're suffering in the inside."

"Sickle cell anemia is a blood disorder of the red blood cells," said hematologist oncologist Dr. Angelica Garzon. "It can cause pain and other complications. The red blood cells carry oxygen through the body and gives you energy and when you have sickle cell anemia it causes the deformation of the cells," 

Emanuel used to receive monthly transfusions to prevent strokes.

His mother is always monitoring for fevers and managing their pain, which they sometimes try to hide.

"I try to hold it in most times," Emanuel said. "But sometimes, I just have to go."

"It becomes a very isolating thing because they themselves feel different but they don't want anyone to broadcast that," Garzon said.

On Monday, Broward Health hosted its second annual Living Well with Sickle Cell luncheon to honor the patients who've been through so much and raise awareness for the disease. It's also a chance for people like Tribulant to share their lessons with others.

There is no cure for sickle cell disease and treatments are limited.

But medical advancements over the years have increased life expectancy for patients by decades. 

"As a mother, I had to stay strong for my kids," she said. "I just have to take care of my kids day-by-day with this chronic illness."

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