MANSFIELD, Texas — Monica Brown is an adult woman living with sickle cell anemia. As a patient, she has experienced many hurdles in seeking treatment for the disease.
Fortunately, Brown doesn't look like she feels sometimes when her disease flares. Sometimes, not even medical professionals comprehend what she experiences.
"Imagine you being stabbed in your body, everywhere," Brown said.
That's how Brown described what life is like living with sickle cell anemia. What's worse, she shared, finding specialized treatment hasn't been easy as an adult patient.
"We don't like going to the hospital," said Brown, "But you have to sometimes because you need help, that's what the hospital is for."
Better sickle cell treatment for adults is now a life mission for Dr. Michelle Mackey. She's studied the blood disease for more than two decades. Mackey has also gotten the attention of sickle cell task forces around the country because of her extensive studies.
"Sickle cell disease itself is a genetically inherited disease that involves with the blood," Mackey said.
All newborns are tested for the sickle cell disease and trait in Texas, and one out of every 2,000 babies in Texas is born with it. Nationwide, 50% of sickle cell anemia patients live past the age of 50. Mackey's mission for better treatment for adults living with sickle cell is also personal. She knows the disease like the back of her hand.
"My youngest son was diagnosed with sickle cell disease as a baby and he has been in the hospital no more than three to four times. Today, he's 23 years of age," said Mackey.
Remarkably, her son has only experienced hospital stays a handful of times thanks to her care and treatment. Now, Dr. Mackey wants to open a Sickle Cell Hospital in North Texas that will specialize in treating adult patients like her son. She's already looking at vacant commercial properties like a location in Mansfield.
"They have a 26-bed facility and two beds to a room so that's a whole 55 individuals. For now, it has the O.R. room," said Mackey. "It has an area where we can do surgery. And all those things are needed for individuals that are dealing with sickle cell. If they happen to have surgery and the pharmacy area, has a cafeteria in there."
Many adult patients like Jan Greene believe Mackey's dream would also help educate more doctors. Talk of opening such a facility for adults has spread fast throughout the sickle cell patient community.
"As someone that dealt with sickle cell. I've had a lot of issues trying to find a good doctor that would be dedicated to me," said Jan Greene, "Having a hospital dedicated to sickle cell means that those people with sickle cell are going to get the fair treatment that they need. They're not going to be pushed aside for other things that people think are more important, like cancer or diabetes. Sickle cell is a disease that a lot of people do not talk about, mainly because it does not cover the overall aspect of the human race."
Sickle cell patients are predominately in the African American community. But there is a percentage of whites and Hispanics who are born and living with sickle cell. Still, SCD and SCT impact African Americans at disproportionate rates simply because they both are evolutionary traits. The U.S. incidence estimate for sickle cell trait was 73.1 cases per 1,000 black newborns, 3.0 cases per 1,000 white newborns, and 2.2 cases per 1,000 Asian or Pacific Islander newborns, all based on data from 13 states according to the Center for Disease Control.
Even with people doubting her mission, Mackey said she has not let their skepticism interrupt her work.
"I'm one to believe it can be done," said Mackey.
The Texas mother has put in countless hours researching the requirements under state law for her to open a specialized hospital. She is also hopeful for the right investors to team up with for the massive project once she secures a viable location.