INDIANAPOLIS — 20-year-old Sarah Holdcroft is a pageant girl through and through. But don't let the stigma of that fool you.
"I promise you it's not about who has the biggest, curliest hair and the biggest smile," Holdcroft said.
Holdcroft has been fighting stigmas her entire life.
She was diagnosed with sickle cell disease at birth, an inherited blood cell disorder that has resulted in periods of extreme pain, known as pain crises, and hospitalizations throughout her young life.
"I feel like when people hear a disease they are like, 'Oh I can catch it, no no, I don't want that,'" she said.
It's that mindset that pushed Holdcroft to talk about the disease.
She is now using the pageant stage to advocate for sickle cell warriors everywhere.
"We really need to start talking about it. It's a subject that needs to be taught more, it's not just some one sentence in some science book that you learn about," Holdcroft said.
The disease is a genetic blood cell mutation that limits the body's ability to hold oxygen. It can be debilitating.
"It's really unpredictable. We have kiddos that are doing all they want to do, going to school, participating in sports, enjoying life and then all of a sudden will develop this excruciating, debilitating pain," Dr. Seethal Jacob, a Hematologist at Riley Hospital for Children, said.
She says Sickle Cell is the most common inherited blood disorder in the world.
"It affects what's called hemoglobin, which is like a little packet of protein that sits inside of our red blood cells. Red blood cells give our blood that red color that it is and helps us transport oxygen all through the body," Dr. Jacob said. "Hemoglobin plays an important part in holding onto that oxygen and letting it go when we need to."
Holdcroft is cared for by Dr. Jacob, director of the Comprehensive Pediatric Sickle Cell Program and team at Riley Children’s Health.
She says Holdcroft's condition is chronic, meaning she feels some sort of pain all the time.
"When I am feeling pain, my biggest is in my hip. It feels like someone is stabbing me repeatedly over and over again," Holdcroft said.
At each competition, Holdcroft shares her resilience and positive attitude through her platform, “Sickle Cell Can’t Stop Me.”
It’s an opportunity to bring awareness to the disease and inspire others with the condition to keep going.
"With every battle comes a warrior, and every day is truly a battle with sickle cell," Holdcroft said.
Holdcroft isn't alone in the fight. Dr. Jacob says sickle cell comes with discrimination.
"It's really a disease that's been met with a lot of neglect overtime. That neglect has turned into healthcare disparities, poor access to treatments and availability of donors for transplant and the list kind of goes on," Dr. Jacob said.
Research backs that up.
"African Americans [and] Hispanic Americans are predominately affected with the disease. Minoritized communities that experience a lot of racism and neglect from society, but also from the healthcare system as well," Dr. Jacob said.
Riley Hospital for Children research shows one in 13 African American babies are born with the genetic mutation. In the state of Indiana one in every 400 African American births has sickle cell disease, research shows.
Research from the Indiana Sickle Cell Data Collection Program (INSCDC) show 87% of the sickle cell population in the state are African American.
The average age of SCD population is 24 years, research shows.
The racial disparities are something that Holdcroft is vocal about. She says she wants to see an end to the debilitating disease.
"Even though I have this disease, this isn't going to stop me. You have to choose to get up. You have to choose to fight," Holdcroft said.
The Riley program sees nearly 400 pediatric patients living with sickle cell.
The life expectancy of someone living with sickle cell is on average 30 years less than those without it.
Recently, Holdcroft competed in Miss Cardinal, a pageant through the Miss American Organization, where she was named “Miss Cardinal Spirit.” It’s an award given to one individual who represents the five traits of Miss America: Sisterhood, style, scholarship, success and service.
