(FOX 2) - September is Sickle Cell Awareness Month, and the Michigan Chapter of the Sickle Cell Disease Association of America is planning an event to help raise awareness about the disease.
Stefanie Worth didn't know that she and her son's father were both carriers of the sickle cell trait until their son, Thomas White, was diagnosed as a baby with sickle cell disease.
"As parents, I think when we got that initial diagnosis you do go through a bit of a grieving process," she said.
The disease was brought to the U.S. during the slave trade and disproportionately impacts the African American community.
"One out of 12 African Americans have sickle cell trait and about one out of 400 have sickle cell disease, so we think there are roughly 100,000 individuals in the United States," said Dr. Wanda Whitten Shurney, who's the medical director for the Michigan Chapter of the Sickle Cell Disease Association of America, an organization that was started by her father, Dr. Charles Whitten, in 1971.
It's a genetic disease that impacts the red blood cells and causes them to be misshapen and sticky. They block the blood vessels, causing excruciating pain and organ damage.
"Because every part of your body needs oxygen, every part of your body is impacted by sickle cell disease," said Dr. Whitten Shurney. She's also the attending pediatrician in the sickle cell clinic at Children's Hospital.
"We're asking people to stand up and be counted so we can know how big of a public health issue this really is," she said.
Every child is tested for sickle cell and the sickle cell trait at birth. Children with the disease must get on medication right away and it can be a very difficult journey with a shortened lifespan.
Stefanie's son, Thomas, had been hospitalized 18 times by the time he was just 15 months old. He had other stays at the hospital as well. He's now 23 and getting ready to graduate from college in Ohio - but there was a close call while away at school.
"Every single day I think about the fact that if I had not gone to pick him up that I would have lost him," said Worth. She said doctors at a hospital there didn't know enough about sickle cell, which is a problem at many hospitals.
"One of the initiatives that we've started here is really a focus on trying to partner with hospital emergency departments around the proper care of sickle cell patients," Worth said.
That means understanding the kind of pain that sickle cell patients experience. It's an ongoing effort to educate patients, parents and physicians, and they're raising awareness now with their Sickle Cell Matters virtual walk.
This year their annual walk is on Sept. 19. It's virtual, of course, because of COVID but there is even a Sickle Slide dance move they want you to.
"Our theme for the walk is kind of, move for sickle cell. So you can move anywhere you are and anyway you want to," said Dr. Whitten Shurney.
She said there's plenty to be excited about with new medicines becoming available in the last couple of years and scientists working on a genetic cure for sickle cell.
"The future is brighter than it has been ever before," she said.
And as more attention is focused on systemic racism and deep disparities in health care, parents like Worth have nothing but hope.
"We are fortunate really to be in the midst of Black Lives Matter movement where health systems are saying, okay, we are going to pay more attention to the health injustices and the health inequities," Worth said. "For me, I make no choice but to believe in a hopeful future for him. I just refuse to see it any other way."
For more information about the virtual walk, click here.