September is Sickle Cell Awareness month, meant to highlight the need for research and awareness about the rare blood disorder that impacts hemoglobin, a protein in red blood cells that carries oxygen.
"I gotta learn myself to be more vocal and tell people about what I'm going through," 17-year-old Daisha Felps said. "It's a little bit of a struggle. I always have to be hydrated. Sometimes very hot or cold weather can cause pain attacks."
Felps drew the artwork used for Children's Health's Sickle Cell Awareness Month t-shirt.
"Art is like, what it does for me, it makes me happy," Felps said. "It's like putting your own imagination on paper. It expresses you and how you are."
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Felps spent her 17th birthday last month in the hospital after a sickle cell pain attack. Her hospital visits started early in life. Felps was born with the rare blood disorder.
"They told us she had sickle cell," Felps' mother Ra'Meca Boyette said. "I didn't even know I had the trait."
Sickle cell is a global disease that impacts Black and African American communities at a higher rate than the general population. According to the Centers for Disease Control, 1 in 13 people who are Black or African American carries the inherited trait, and 1 in 365 will be born with sickle cell disease.
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"So other diseases that are not sickle cell disease that affect across groups tend to have a lot more treatments," Dr. Alecia Nero said. 'It is an example of bias racism discrimination in our healthcare system."
Nero is a Pediatric Hematologist at Children's Health Pediatric Sickle Cell Program and an Associate Professor at UT Southwestern. She is also Felps' doctor.
"People don't understand that yes, you can look like way and still be very sick," Nero said, explaining why sickle cell is sometimes called the 'silent disease'. "So it can lead to some misunderstanding about the disease and how serious it is."
Advances have improved life expectancy rates, but patients can still die from the disease. "Yes, it is still a life-shortening disease," Nero said.
Sickle Cell Awareness Month is to highlight the need for more research, and the importance of people donating blood and bone marrow, which can be life-saving for sickle cell patients.
"Daisha actually does really well now with her sickle cell journey," Boyette said.
"Don't let that bring you down," Felps said. "Just keep moving forward."